At Least the Turkey Was Frozen

 

“What was that weird noise?” I asked.

“Your dad?” Bob replied.  “Should I go check?”

“Please, cause he may be on the toilet, and I don’t want to see that”

CALL 911

I can’t feel a pulse

Where is he, ma’am?

On the toilet.  No pulse.  Not breathing.

Get him on the floor, ma’am, lay him down

Toilet FULL of poop.

Dad laid out on the floor, shorts around his ankles

Eyelids flutter

Make sure the doors are open and all pets secured.

Wrangle 8 cats to a locked room.

One off duty EMT

One fire rescue

Three fireman

One VERY tall sheriff

Two EMT’s (women)

Dad sitting up

Flirting with EMT’s

Refusing hospital

Vitals ok

Did you know you can pass out from pooping?

The vasovagal syncope trigger causes your heart rate and blood pressure to drop suddenly.

But at least the turkey was frozen

On Thanksgiving morning, I went to the fridge to fetch the turkey.  The turkey that had been thawing for SIX DAYS.  It was still mostly frozen.  Panic set it.  Company was coming.  WE HAVE TO GO BUY ANOTHER TURKEY!  Bob and I both showered and got ready to go to the store.  I was googling how to cook a frozen turkey (it CAN be done!) when we heard the weird noise from upstairs.

There was so much to be grateful for this Thanksgiving

The turkey was frozen, so we were up and dressed early.

Lake Cunningham Fire Department responding so quickly

AJ, the off duty EMT, first on the scene and so calming

All the responders who were so kind and attentive.

The women EMT’s, because Dad would never miss an opportunity to flirt.

Thanksgiving dinner on the table, on time, all at the same time, with everyone alive and well… that may be a Thanksgiving miracle.

Grief

My last post was April 18, 2018.  On May 2, 2018, my mom kept telling us her tummy hurt.  She didn’t want to eat.  This was not abnormal.  She hated eating.  With her Alzheimers, it was hard to tell what she was actually communicating and feeling, so we took her to the hospital…

Twisted bowel.  Hard decisions to be made.  Mom alert and aware.  No surgery.  No life saving attempts.  Please let me go.  Hospice placement.  Kids and grandkids arrive. Everyone has a chance to say goodbye.  After everyone had left, quiet.  Unreponsive.  Whispered love.  Gentle touches. Tears shed.  Quiet permissions to go.  May 8, 2018, while nurses were in the next room and I had fallen asleep, mom slipped away.  Ever and always, trying not to disturb anyone.

What has grief looked like since? Not what I expected.  Not at all.

Relief… mom is no longer fighting with her own mind to live each day.

Sadness.. Alzheimer’s stole my mom in bits and pieces. Heartbreaking.

Anger.. Why? Just… WHY?

Denial and avoidance.. Stay busy. Stay detached.  Stay away from feelings. Build a protective wall around my heart.

Guilt.. Shouldn’t I feel worse?  Shouldn’t I be crying buckets?  Shouldn’t I miss my mom way more than I do?

Depression..letting go of activities that gave me energy.  Doodling.  Writing.  Crafts.

If you are reading this, you have been on this journey with me.  You have held me close in prayer and in person. You have encouraged me, made me laugh, helped me to wobble through the whole journey of Alzheimers, live in parents, and more.  You’ve carried me through the past 18 months of loss.

We are five days into the new decade.  There are choices to be made going forward.

I choose to

Pick up my pens and doodle.

Write.

Let go of guilt.

Be vulnerable.

Look forward and trust the journey.

Trust the One who loves us through our grieving.

 

 

Land Mines and Whack a Mole

There are days where it seems I waffle between avoiding land mines and playing whack a mole.  Sometimes I innocently manage to step into something that blows up into a situation. Others I spend time managing one crisis after another, like hitting the mole when it pops up.  Sometimes it is a blend of both.

There are days…

Where what you believe to be true no longer is..

When no matter what you do, it is not enough..

When best intentions go horribly wrong…

When accidentally moving the toilet paper will trigger a massive hissy fit…

When the Alzheimers brain gets into a repetitive loop and no method of distraction can stop the cycle…

Expecting the unexpected, tip toeing around potential landmines, and managing crises’ before they happen is EXHAUSTING.  Some days no amount of stress management methods like breathing, exercising, listening to music, coloring, or doodling helps.

I am incredibly blessed with a husband and a posse of friends who are able to gently remove the mallet from my hand and steer me out of the mine field.  Quite often, they take my place in the midst of the battle and send me to a happy place to regroup.  They talk me off the ledge, make me laugh, send me goofy emails, and encourage me.  The remind me to lean into the richness of God’s grace and mercy.

There will always be relational land mines.  We will always be playing some form of personal whack a mole. Strength comes not in playing the game, or avoiding the blow ups, but in handing over the mallet and letting grace guide our steps.

PS… I’m still REALLY bad at my own revelations, but I just keep on trying…

The Poop Diaries

One of the big surprises of caregiving has been finding out how much elderly folks LOVE talking about bodily functions.  Gas, burping, and best of all…  poop.  It really is one of the main and all encompassing topics of each day.   Quantity, quality, dimension, consistency, and whether it is solid, liquid, or gas. And “never trust a fart” has never been truer…

A typical conversation goes like this..

Me:   Did you poop? Are you ready to get up?

Mom:   I think so.

Me:  (puts on a glove and starts the clean up process)

Mom:  was it worthwhile?

Me:  worth a trophy!

Mom:  how much is there?

Me:  ummm.. a quart?

Mom:  how big are the pieces?

Me:  ummmm. Walnut sized?

Mom:  Can I see it?

Me:   Ooooooh kaaay…

True disappointment comes when I either flush the toilet before she can see, or I cover her artwork with toilet paper.

Then there are the days where she just can’t remember where she is, like during the 8 am toileting routine…

Me:  mom, did you poop? (she only needs help cleaning up when she poops)

Mom:  No

Me:  ok, then finish up in there

Mom: why are you sitting over there? (I’m where I always sit every morning while she uses the toilet)

Me:  I’m waiting for you to get up off the potty

Mom:  why?

Me: Cause I help you when you poop.  Did you poop?

Mom:  I don’t know why I’m here….


Mom: This person was going to do that same thing again then he pooped right away.

We THINK she was telling us that she had used the bathroom before dinner but thought she needed to go again. We’re not sure and didn’t know where to start to sort it out.


Mom: why does it always have to BE like this?

Me: Like what?

Mom: poop.

Me: ummmm

Mom: every day. Poop.


 

 

Lost in Translation..still

Conversations in our house are quite interesting these days.  Dad is hard of hearing.  Mom’s ability to process words, both hearing and speaking, is declining.  Some days no matter how many context clues we have, we just can’t make sense of the conversation.  We do the best we can, but sometimes we fail miserably and with comedic results.    The daily effort of real time translation is exhausting, but we keep encouraging verbal exchanges to keep her engaged.

I’ve tried to record some of the conversations…….

After a 30 minute bizarre conversation about getting mom’s haircut, we had this final exchange. It was pretty funny and I was trying so hard not to laugh..and remember, these are the coherent versions. Real life was far less linear.

Mom: the lady across the street..

Me: Lisa?

Mom: the cookie lady

Me: yep

Mom: where does she get her hair cut? It looks inexpensive..

Me: you want me to ask her where she gets her cheap haircut???


ME: I made you mint brownies

Dad: MIND brownies?

Me: Mint ( trying to annunciation clearly)

Dad: (look of incomprehension)

Me: Pe-pper- mint

Dad: you don’t have to tell me three times!


Dad:  AN-GEL-A….. Your mother is having butt problems again…..

Minutes later…

Mom:  My poop is stuck again.  Can you look for it?


Dad to Dr:  It’s going to be our 61st anniversary

Dr:  Wow! How many children do you have?

Dad:  My wife had 4 births.  We lost the first one at term. Then we couldn’t afford Kotex so we kept having babies.


Mom:  I feel like there are people here

Me:  ummm… where?

Mom: (Gestures around the table where the three of us are sitting…)

Me:  You see Dad and I?  Anyone else?

Mom:  Yes. People. You know.. cats.


Mom:  I think I want to use a wipe for (gestures to face)

Me: Hands her a wipe

Mom:  What’s this for?


Me:   See you after dinner!

Dad: After lunch?

Me:  no, after dinner.

Dad: this afternoon, lunch.

Me:  No, after dinner.


Mom:  Can you find those things?

Me: What things?

Mom:  Those things like this…(makes a round shape with her thumb and forefinger)

Me:  Ummm… buttons?

Mom: No, those things to eat?

Me:  Clues are 1. round and 2. edible…  um…blueberries?

Mom: No. You know, I have had them before.

Me: (running through my mind all round food that mom has had before)…

Mom:  You know, like BEFORE..

Me:  Ummm… CHEERIOS?

Mom: YES.  Can you find some?


Dad:   Jackie comes at 8 tomorrow

Me: no, she comes at 5

Dad:  she comes at 9?

Me:  NO. AT. FIVE. PM (speaking slowly, clearly, and loudly, as he has previously requested)

Dad: it’s a valid question. You don’t have to get snippy

_________________________________________________

Dad: this game (Go Fish) gives lots opportunity to cheat

Bob: it’s a good thing we don’t cheat

Me in the corner: trying VERY hard not to laugh because Bob and I cheat all the time so she can win.

_______________________________________________

Mom, talking about her rash on her back.. it sounds like it is getting smaller.

Me, thinking .. is her rash talking to her now??

_______________________________________________

Mom: my eyes don’t remember very well…

_______________________________________________

Playing Go Fish..

Me: Do you have a Jellyfish?

Mom: a What?

Me: a jellyfish. A jolly jellyfish 😜

Mom: Jollyfish?

Me: jelly

Mom: jolly?

Me: J. E. L. L. Y.

Mom: Jolly? Fish?

Me: showing her the card.. one of these..

Mom: oh, he is so cute.

_________________________________________________

My mother rarely gets mad, raises her voice, or talks back, but when she does EVERYONE knows it….. and she is most coherent then as well.

For instance..

Dad: are you done with that?

Mom: maybe

Dad: (in a louder, annoyed voice). I SAID…. Are you DONE with that?

Mom: ( in an equally louder and annoyed voice) I SAID…..MAYBE

Or….

Mom was sitting at the dining room table folding laundry. To do this, she has to have the table clear so that she can stack the folded items. We do laundry three or four times a week so that she has something to do. She take great pride in this job.

One morning she was folding laundry and had her stacks neatly placed on the table. Dad came downstairs, sat at the table, looked annoyed, and pushed her stacks out of his way. BAD MOVE. VERY BAD MOVE.

Mom: why did you do that? Why? That’s not right for you to do that. To our aide: Did you see him do that? Do you think that’s right? Aide: no m’am!

Dad got up and left the room

Mom: (to dads departing back) Richard. That was disrespectful.

Mom: (to aide). Richard makes me so mad. That was disrespectful. Do you think that was right?

Mom: That made me so mad!<<<<<<<

Culture Shock in Caregiving

Culture Shock: a sense of confusion and uncertainty sometimes with feelings of anxiety that may affect people exposed to an alien culture or environment without adequate preparation (Merriam Webster)

For over a decade, I led cross culture orientation training for short term mission teams,  which included a bit about culture shock.  I had never REALLY experienced the full range of culture shock as none of my trips overseas lasted more than three weeks.  I would go through a bit of the honeymoon period, a bit of the “in the pits” period, and then be happy to be home, but little did I know what full fledged culture shock feels like.

Knowing about culture shock has helped me navigate the new world of live in parents and full time caregiving.  While my husband and I are in a place that is physically familiar to us, our life situation is completely different.  Lack of privacy, independence, personal space just begin to describe the changes.  Preparing three meals a day for a variety of taste levels and eating ability, laundry for four.. how DO two elderly people wear so many clothes??   Cleaning toilets at least twice a day, changing diapers once (thank you, Jesus, mom is only incontinent at night!) and multiple chances to perform personal hygiene care for mom add to the daily fun.  Linear, rational, and coherent conversations are rare.

Adding to the complex nature of relationships is the fact that my parents are going through culture shock of their own.  New house, new routines, less stuff, and less independence.  Dad is no longer driving, but wants to go places when he has energy. Mom doesn’t want to go anywhere. EVER. Dad is struggling with mom’s diminishing brain function and gets frustrated when she can’t remember the past…or for that matter, the present.

The four stages of culture shock are Honeymoon, Frustration/Irritability/Hostility, Adjustment, Acceptance.

Honeymoon:  Everything is new and exciting.  In our case the routine was new, but stressful, all energy focused on getting my parents moved in, working with my mom’s physical limitations and diminishing mental faculties.  Under stress, I go into project mode, focused on the task at hand.  I was spending five plus hours a day with mom just in the bathroom, trying to manage the pain from her first hip surgery, guiding her through her day both physically and emotionally, preparing meals, and then dropping exhausted into bed after her hour long bedtime routine.  For the first month we had  OT and PT providers coming to the house different times of the week to work with mom.  We were establishing doctors… GP, cardiologists, orthopedists, neurologists and oncologists…  all of whom needed full histories.  We had to go to the DMV to get South Carolina IDs so that we could get handicapped cards for the car.  Twice.  We moved as a unit, the three of us.  One with a cane and one in a wheelchair.  I would be carrying soft seating cushions, a backpack full of paperwork, pull-ups, wipes, rubber gloves, and a change of clothes. I carry a diaper bag again after 35 years.  And this was the honeymoon period….

Frustration/Irritability/Hostility is next, and whoa, is it nasty!!

Once the initial honeymoon phase wore off, the frustration set in.  Frustration in losing independence, privacy, personal space.  Resentment from limitations in scheduling, traveling and just being able to relax.  The tension headaches started.  Tense shoulders.  Stiff jaw from clenching teeth.  And oh, how many times I have just bit my tongue and walked away.  Sending them to a nursing home crossed my mind more than one.  Complaints about the food, the lack of social interaction, the air temperature in the house, the noise level, the clarity of the tv screen, and more all start to build up and fester.  Childhood baggage is back in my house after years of trying to overcome inadequacy, low self esteem, and always falling short of being the perfect daughter.  Guilt for these feelings compounds the frustration.  It’s a hard time.

As I slowly move towards the adjustment phase, I know that it is only by the grace of God, the patience and support of my husband, and LOTS of prayers that keep me off the ledge of despair.   Support of friends who listen, laugh, hug, and come sit with my parents so I can leave for an hour boost my spirits and help me cope.  A wonderful home aide comes three times a week, and truly, a day without Jackie is a day without sunshine!!  Through weekly meetings with a social worker who specifically cares for caregivers, I am learning techniques identifying and reducing stress.

If you are reading this, then you are part of my care team… folks through the years who have deeply affected my life and now help me put one foot in front of another.  You are a gift from God to both Bob and I, and we love you!

 

 

 

Choose Hope

While the community around me was eagerly anticipating 2018, I was facing the new year with a heavy heart.  2017 had been so hard.  Moving parents in with us. Dealing with Alzheimers and cancer.  Loss of privacy, independence, and identity.  Guilt.  So many people were praying for us, supporting us, and reaching out.  I felt ungrateful.  Yet I could not get out of my grey and I couldn’t see the future as anything but bleak.  I expect each day to wake up to find one of my parents has died in their sleep.  Dad from his aneurism, or mom because she forgot to breath.  I expect to fail in some way… food not hot enough or it’s boring, or not what they are used to.  I expect grey days. And because that is what I expect, that is exactly what I get.

God spoke through my pastor at the New Years Eve service.  His message reminded me that regardless of how grey, how full of despair we feel, there is hope.  He said “The scripture says now abides—faith, hope, and love.. and of course the Apostle concludes the greatest of these is love. On this we agree. But let us not forget “hope” made the top three. Hope might not be the “gold” but it is at least “bronze” or possibly “silver.” Consider the qualities that did not make the cut—righteousness, kindness, compassion, forgiveness. So “hope” is well accomplished. It may not have won the Oscar but it was nominated. So hope is valuable. We are to live letting our hope not fears shape our future.”

At that moment, hope flickered.  Like a little glowing ball in my hands, something to protect.  I pondered this all week, hope still flickering against despair.

Then God spoke through my pastor again a week later.  The message “The Detour” from Matthew 2:13-23 describes the Holy family fleeing to Egypt, only staying until God sent them somewhere else.   Egypt was a detour, not a destination.  So we were challenged…   GET OUT OF EGYPT.

Have we lingered too long in a foreign land?  Yes, despair is foreign, bleak, and dusty.

What is keeping us there?   Good question!!

How do we leave?   For me, it is that little glowing ball of hope I am still protecting in my hands.

I need to CHOOSE to leave Egypt, or I never will.  But I need to let go of some baggage.  I need to let go of grief, loss, hurt, being sad, and wishing for “what was”.

I need to choose hope.  Every day.  Several times a day.

It is a fragile journey from despair to hope.  One that no one can walk alone.  Ya’ll accompany me everyday  through your prayers, kind words of encouragement and support, and your love.

For anyone who walking this journey as well, you’re not alone.  For 20 years, this benediction has been a comfort to me, adapted for current feelings.

Jesus died for your pain.  Lift your head from despair to grace.  May the God of hope fill you with all joy and peace in believing, so that by the power of the Holy Spirit, you WILL abound in hope.

I am beyond blessed to be part of this community of hope.

Seventy Times Seven

Then Peter came to Jesus and asked, “Lord, how many times shall I forgive my brother or sister who sins against me? Up to seven times?”  Matthew 18:21

Lord, how many times shall I…..

Repeat what day it is?

Wipe a poopy bottom?

Fix a meal that someone is bound to complain about?

Repeat something “louder, slower, clearer”?

Give care and not expect thank you in return?

Bite my tongue?

Breathe deeply and walk away?

Lose at “Go Fish” on purpose?

Decipher confused speech?

Pick up a used kleenex, dirty dish, cracker crumbs?

Remember “it’s not personal”

And Jesus answered..  “I tell you, not seven times, but seventy-seven times.  Matthew 18:22

 

God’s Principles for Caregivers

My experiences training with the “Going With God” Toolkit by American Baptist International Ministries has filtered into my life now as I transition from working professional to caregiver.  Adapted from “God’s Principles for Short Term Mission Trips” by Ann Borquist, below is “God’s Principles for Caregivers”

GOD’S Principles for Caregivers

God is in charge!

  • God has a plan for your special person and for you through your caregiving experience.
  • Let go of what you think is best and listen for God’s lead.
  • God will be walking with you.. leading, alongside, and even dragging you at times.

Open Heart, Open Hands

  • An open heart is free to be led by the Holy Spirit and overflow with love.
  • An open heart is free to be broken by the injustice and pain of seeing your special person suffer.
  • An open hand is ready to receive what your special person can offer.
  • An open hand is free to accept what is, instead of what could be.

Doing is Less Important than Being

  • Walk humbly through your day.
  • Focus on your special person, not solely on the caregiving tasks.
  • Work on building relationships, especially when relationships are difficult.
  • Take a deep breath when things don’t go as you expect.
  • Be flexible, laugh, and love.

A Servant’s Heart

  • Learn from your special person; honor them and God by serving them.
  • There are many ways of doing things; yours may be right for you, but may not be the best way for your special person.
  • Be adaptable – try new things, set aside biases and work on blending your lifestyle with your special persons.
  • Be the face of Jesus Christ in what you do and say.

 Scripture that helps!

Therefore, as God’s chosen people, holy and dearly loved, clothe yourselves with compassion, kindness, humility, gentleness and patience. Bear with each other and forgive one another if any of you has a grievance against someone. Forgive as the Lord forgave you. And over all these virtues put on love, which binds them all together in perfect unity. Let the peace of Christ rule in your hearts, since as members of one body you were called to peace. And be thankful. Let the message of Christ dwell among you richly as you teach and admonish one another with all wisdom through psalms, hymns, and songs from the Spirit, singing to God with gratitude in your hearts. And whatever you do, whether in word or deed, do it all in the name of the Lord Jesus, giving thanks to God the Father through him. Colossians 3:12-14

In your relationships with one another, have the same mindset as Christ Jesus: Do nothing out of selfish ambition or vain conceit. Rather, in humility value others above yourselves,  not looking to your own interests but each of you to the interests of the others. Who, being in very nature of God, did not consider equality with God something to be used to his own advantage; rather, he made himself nothing by taking the very nature of a servant, being made in human likeness. And being found in appearance as a man, he humbled himself by becoming obedient to death – even death on a cross! Philippians 2:3-7

 

Give Us This Day Our Daily….

There was a boy in college who used to come through my checkout line at the bookstore.  His name was Justin Case.  Say it out loud.  Yep.  I think of him a lot.  I must, since I say his name frequently.

I need to save this piece of yarn, Justin Case.

I better stock up on tamales, Justin Case.

We should move all the plants inside, Justin Case.

Sometimes, Justin Case is necessary.  Like tying down all the deck furniture and moving the plants inside before a hurricane.

But Justin Case can be a symptom of worry and a lack of faith.  And he has a cousin.. What If?

When God provided manna in the wilderness he did so with specific instructions through Moses. “And Moses said to them, “Let no man leave any of it till the morning.” But they did not listen to Moses; some left part of it till the morning, and it bred worms and became foul; and Moses was angry with them. Morning by morning they gathered it, each as much as he could eat; but when the sun grew hot, it melted.”  Exodus 16: 19-21

When Jesus told us to pray “Give us each day our daily bread”  Matthew 6:11  Did he mean it?

As I look around my life, I realize that I need to let go of Justin Case.   I really didn’t know him that well, anyway.  And I need to banish his cousin What If.

Taking one day, one minute, one breath at a time helps keeps me in the moment with God.  Some breaths are jagged, some minutes long, and some days feel like they will never end, but knowing that there is One who will give me what I need… not what I necessarily want…every single day is an amazing comfort.

Loving God,

Give us each day our daily bread.

Our daily

…patience

…strength

… peace

… courage

… joy

… grace

… mercy

Keep us grounded in today.

Not yesterday, we can’t change the past.

Not tomorrow, worrying about the future can paralyze us.

Open our eyes to your gifts in the present.

Mobilize us to multiply your gifts to bless others.

Amen