What the Eyes Can't See

Today I asked my husband, Mike, to write his perspective on caring for Erik.  Here is his post:

Since I've never written a blogpost post before, I'll ask you to allow me to place on the table my apprehensions about writing.  One of my apprehensions is that my writing style is not as conversational and engaging as Liz's.  Liz is casual and joyous while I tend to be a little more formal and serious, but that's ok if you know that up front. My greater apprehension is the topic that Liz has asked me to write about.  We visited Erik today and had a fairly deep discussion afterwards about our thoughts and feelings concerning him, and she wanted me to write about it. So this blogpost may be heavier than normal.  But she's asked me to write, so here I am.  Just consider yourself forewarned.

Today's visit with Erik was a mix of the mysterious, the miraculous, and the mundane.  Erik was sitting on his bed when we walked into his room, legs crossed and upper body bent completely forward as he seemed captivated with something microscopic in the deepest fibers of his blanket. What he sees in his blanket is a mystery to me. Is he fascinated with the blanket's design pattern?  Did he become obsessed with a piece of lint?  Or is something else happening that is completely incomprehensible to me?  I have no clue, but I'll lay odds on the Door Number 3.

He must have heard our footsteps because he straightened up from his blanket, met eyes with me and said, "Hi, Mike."  In case you didn't know, "Hi Mike" is the miraculous part -- he had not said my name in months. I should be grateful for this rare moment of awareness, cognition and verbal-ness, but I admit that his greeting primarily stirred in me a desire to hear and see more. He did manage to smile at me a couple of times during the remainder of our visit, but that was it. I am grateful for this, but I want more than this.

The remainder of our visit proceeded like most others. We fed him a snack. We watched him examine his blanket.  I rubbed his back.  Liz rubbed lotion on his hands. We said kind things to him.  He shrieked a couple of times, presumably from pain that came and went quickly.  After a time, we said our goodbyes and left.  Liz's eyes were red and filling with tears.  I wanted to "fix everything" but felt clueless.

Liz and I talked about our visit during the drive home. We prayed for Erik when got home. And we prayed about our questions concerning the mysterious, the miraculous, and the mundane of Erik's life.  It's a mystery to me, for example, why Erik has to go through such a thick mental fog in the sunset of his life. We believe in a God who can perform miracles, and I sometimes wonder why He has not brought healing and wholeness to Erik. And I wonder why Erik must continue to endure the monotony of a life where the most fascinating thing about it is his blanket. These are my questions, so to be fair, I should say that Liz's faith is much more straightforward than mine. She tends to take the Lord at "face value" and simply believe. I believe in the end, but often have to travel a labyrinth of questions before settling down and trusting God.

We have needed perspective through this caregiving experience, and as Christians we have looked to the Lord for what we have lacked.  He has provided perspective in abundance.  Far more than Erik's fascination with his blanket, life itself is mysterious -- who of us can say we understand it?  Liz and I are trusting the Maker of heaven and earth with the mysteries of Erik's life and health as we care for him.  As for miracles, there is no greater miracle than resurrection.  Liz and I are trusting that Erik's complete healing will come when Erik sees Jesus face to face.  And what of this mundane fog that Erik experiences each day?  Liz and I are trusting that our unseen Father in heaven is doing good through Erik's life in ways we cannot know.  I look around and see the compassion stirred in others because of Erik and know that the prompting of love is the work of God, even if Erik is unaware of how deeply the Lord is working through him.

To some, these thoughts of trusting God will seem like wishful thinking.  For me, they are like the very breath I need to live.  Without this simple trust, I would lack the capacity to love well, and what love I do have could grow cold in the blizzard of Erik's struggles.  Without this simple trust, I would just continue to have questions for which no immediate answers would satisfy.  I'm learning that, at least sometimes, trust is better than answers. Especially when trusting means I've found myself in the arms of our Father who knows us and cares. "See, I have engraved you on the palms of my hands; your walls are ever before me." (Isaiah 49:16).  I think that God thinks about Erik all the time and that Erik's name is engraved on His hands, so to speak.  I think that God thinks that way about all of us.

So I end this blogpost with no easy answers about Erik. No "happily ever afters" or a nicely tied bow.  Instead, Liz and I continue to hope in our unseen God and to believe that He is good, even when our eyes make us question what is happening.  And that is enough.

Mr. Erik - latest news

Happy Holidays!

I know I've not shared much lately about Erik. There have continued to be good days and not-so-good days. Some days he often cries out in pain. And his appetite is hit and miss. Below, he had to receive fluids via IV and his hand was wrapped up.  I could tell the tubes confused him. He seemed to find a little comfort in holding onto his soft neck pillow. 

Another day I found him in the lunchroom, totally sacked out because of some strong pain medicine. This was the day I found him holding a teddy bear beneath the table. Erik never woke up to eat.

Here he is - awake, more alert, shortly before Turkey Day. 

Then, I found Erik one day sitting Indian style on his bed, leaning over onto his crossed legs and falling asleep.  I got his neck pillow and teddy bear and propped up his head so at least he'd get some support. How can he sleep bent over like that? He just does.

Thanksgiving Day we had a large group of family at our house.  Sadly, Erik wasn't able to join us. After our meal, sister Becky, niece Sarah, and stepmom Carol went to check on Erik. Sarah so sweetly helped him in the dining room.

And while they were waiting for his food, Erik held her hand.

More hand-holding with Sarah. I think Uncle Erik is enjoying his niece a lot.

Sarah hopes to be a nurse one day. She'll be a good one.  Erik is greatly on our minds this holiday and in our prayers.

Warmest holiday greetings to your family from Erik and me.

Fatten him up!

The main concern with Erik's heath right now is his weight.  He's been losing steadily since he entered the skilled nursing facility at the beginning of September.   For a long time he wasn't in the mood to eat or he fell asleep while eating.   His meals were changed to mechanical soft, enriched with extra calories and he started getting an appetite stimulator.  We saw no change; so the dose was increased and now I think it's working.  Erik's eating, with vigor. 

When I visit I try to supplement his diet with a Magic Cup or a Mighty Shake.   These contain lots of calories and nutrition in a small package.  And Erik likes them.  

And he's holding it himself, another good sign.

Yesterday he ate a Magic Cup AND a Mighty Shake in one sitting.  600 calories.  

What else could I bring him that would taste good?  Wendy's Frosty?  Any ideas?  Gotta fatten this sweet guy up.  

The Beauty of Letters

Hello, everyone.  I hope this finds you well and enjoying this wonderful season.  I got to open a time capsule last week!  First, some background:  In the mid-80's when Erik was about 22 years old he resided in Dallas in a group home.  He lived with two or three other young men who had Down syndrome. They were cared for by houseparents and they all became very close to each other.  Erik still worked at the hospital in Irving during this time and, if I'm not mistaken, he took buses to and from work. Back then, he was a wiz at bus schedules; and TV guide schedules for that matter.

 During this time - in 1983-84 - Mike and I were engaged.  We were separated from one another; he in College Station, me in Irving. I wrote him pages and paaaages of letters. Long distance phone calls cost an arm and a leg back then.  Well, last week I didn't feel well; so while resting one afternoon I decided to dig into the bulging box of letters.   Along with the pining of love and telling Mike how much I missed him, I found several references to Erik. Oh my goodness, what sweet memories. Many which I'd totally forgotten.  I treasure these little stories even more today since Erik and I spend lots of time together but his Alzheimer's robs us of the gift of conversation. Would you like to read some of my treasures? 

I talked to Erik a little while ago and asked him to pray for you.  He said he would.  He said, “I miss Mike”  I said “So do I".  I told him you were coming Easter and he quickly reminded me of his birthday and that he wants a present. 

Saturday night we’re celebrating Mamie’s and Erik’s birthdays.  Erik’s birthday is the 23^rd and Mamie’s is the 24^th.  I know what I’m going to get Erik – yesterday when we drove to Ennis he said he needed a portable fan.  (at first I thought he said “van” and I screamed “Erik I can’t afford a van!”)  

Last night (Sat) it rained so hard for a long time there were tornado warnings all over our area.  Marble size (and bigger) hail fell on our house and I was in the den and it came down the chimney.  Erik and I were the only ones home and he was talking to Bernadette for HOURS and then he went into the kitchen and I heard him saying something, I don’t know what.  But I asked him WHO was he talking to?  A couple of minutes later he informed me he was talking to God.

Erik and I are having fun. He always does little things for me.  He LOVES to scare me!  I don’t know why.  Yesterday I picked him up from work and there were Christmas carols on the radio and he sang his heart out to me, It was great.  But when I sing for him it’s “Wiz, don’t sing!!"... Erik just opened a Christmas present from a close friend, Old Spice!

Today Erik and I went shopping at my favorite mall in Dallas, North Park.  I got to exchange some clothes.  Erik was so patient, he had to wait for me often ... I’ve got to stop writing and go to sleep.  I’m getting up early this week to take Erik to work and sing to him.  He’ll love it, I’m sure!

I talked to Erik on the phone and he asked how you were... and told me he prayed to God for me.

Erik told me on the phone yesterday, “Liz, I sure miss ya”

It was so funny – yesterday Erik and I were together and I told him I would be scared and lonely if he wouldn’t stay with me when our parents were gone and Erik said “Liz, Rolfe is there!”  I said, “But I need you too”.  He said, “Oh, all right.”  (I really have no memory of who Rolfe is, I think it was a stuffed animal)

Last night Erik called me and we had fun talking.  He wants me to bake him some chocolate chip cookies.  I want to do it but I don’t want to eat them so you may be getting some from me in the next 2 weeks.  How’s that?

When I was a little, little girl, and lived in or old house in Irving one day Erik and I somehow wandered out of our house and went next door.  I don’t know how we managed but we got into their backyard and went over to their pool.  (yes, very scary, we didn’t know how to swim and nobody knew we were there)  Well, Dad was in our backyard and happened to look across the fence and saw Erik and I.  He screamed because we were squatting on the edge of the pool looking intently into the deep end.  We had both thrown our shoes and socks in the deep end!!! Dad rushed over and got us.

I just gave the short letter you wrote to Erik to him and he read it almost all by himself!

Oh, I visited Erik today.  Mike, he has a beard and a mustache!!  I HOPE it’s gone by the time you come but I fear that it won’t be.

Ah, the beauty of letters. Especially revisiting them after almost 30 years.  I'm so thankful for my brother.  Blessings to you today.

Psalm 139:16  All the days ordained for me were written in your book before one of them came to be.

Welcome change

After several days of Erik being withdrawn, struggling with pain or fatigue, today was a welcome change.

When I went to see him at lunch he was eating well and seemed comfortable.

When I sat with him in the hallway afterward he was calm, alert, looked at me and smiled a bit.  This was precious.  You miss eye contact when it's rare.

His leg didn't seem to be bothering him as much and he wasn't as tired.  In fact, he was awake most of the morning, I was told, and was still awake when I left.

He pointed to various people as they walked by.
He noticed some balloons down the hall and pointed to them.
Erik said "Hi!" to a nurse at the nurses's station.  I'm jealous.

But the BEST thing that happened was...we were sitting in the hall visiting with some ladies and FOUR therapy dogs dressed in little costumes came to see us.

A little smile from Erik.  This collie was all dressed up as a fairy.

So sweet.

This one kept kissing Erik's hand.

I loved watching Erik tilt his head to look at this face as he stroked her.

What a blessing they were!

Erik's glasses were dirty so I went to clean them and came back drying them with a towel our sister gave him.  It's embroidered with a football and his name.  He seemed to like holding it and showing it to people.  I'm grateful that he seemed a little more like himself today and was more aware of the world around him.  Rejoicing.  :)

MORE Pajama Drama?

One of the nurse aides in Erik's wing is B.  She's a joyful, fun person.   She saw me this morning as I was heading to his room.  She smiled and told me that Erik has been "pushing her buttons."  She will get him ready for bed, dressing him in the hospital gown they regularly use and wouldn't you know, Erik really doesn't seem to appreciate this bedtime attire.   B walks by his room and sees him sitting up, signaling with his index finger "come here!" She'll go in, find that he's taken off his hospital gown and rolled it up into a ball.  She puts it back on him, talking to him nicely about how he needs to leave it on.  But I ask you, does he?

I have Erik's old, threadbare blue pj's folded in my laundry room right now.  Sometimes I see them and remember what a power struggle we had with them.  And I think, "Well, I guess he's forgotten all about these pj's."   Well, now I wonder.   

Did I ever tell you what Erik would do with pj's when he was little?  He loved his pj's so much he would roll them up and stuff them under his pillow when he got dressed in the morning.  Then at night, he'd get them out and wear them to bed.  My mom never caught on that they weren't showing up in the wash.   Until one day a horrible smell permeated his room and they were discovered under the pillow.   Erik was upset to see them promptly going in the wash because they had become so soft and he liked them just as they were.

You may remember how particular Erik is about pajamas.  (If not, visit this post or this one) 

Another nurse told me today how she found Erik sitting up Indian style in his bed.  He's not tried to get out of bed by himself, thank goodness - I don't think he'd make it on his own.  When he's awake and alone in his room he clearly makes his presence known.   Sometimes he lets out a strange wail or yell "Hey!" as someone walks by.  The other women in the hall tell me they've gotten used to it and it doesn't bother them.  I sure hope it doesn't.   Another nurse aide walked by Erik today as we were sitting in the hall.  She leaned down close to him, curled her finger around his finger, kissed his head and sang, "Erik, my Erik, my Erik and me!"  She said that's their little song. I love that. I love it that Erik is receiving such sweet care in spite of his little protests.

My Rock

I think Erik's feeling a bit better lately.  A week ago I wouldn't have said that.  The leg with the blood clot was swelling up bigger every day.   I didn't like it and I'm sure he didn't either!  I went to feed him lunch last Tuesday.  He was very agitated, upset and NOT hungry.  And so unlike Erik, he screamed at me at the top of his lungs over and over as I tried to feed him.  It made me cry.  Just felt helpless and confused.   But his nurse came in and I was able to urge her to look into the swollen leg issue.   She did and that's why I think he's better. Two days later I went to feed him lunch again. I didn't try to engage him in conversation, I just sat and helped him eat.  It went better, maybe because his food is being mechanically ground now so it's easier to swallow, I really don't know.  Here he is that day before lunch arrived.

He even smiled and laughed later on.  Wow.  My husband and I saw him on Friday; he was alert, seemed more at ease and engaging more with the people around him.

I just never know what each day will bring; I tease Erik all the time -- that he's just a mystery and that life with him is a roller coaster.  This afternoon he was snoozing away in his bed, looking so restful.   

The past 6 weeks have been some of the hardest we've had.  But I'm grateful for the things I've learned and that Erik is ok and that our mom will arrive tomorrow to see him.

Not long ago I was worrying constantly about sweet E.  I knew I needed to trust the Lord and I'd try -- but find myself worrying again.   Then I think the Lord gave me an idea.  I needed to latch onto a character quality of God for the week.   Whenever I'd get overwhelmed or worried, I'd remind myself of that truth about God.  The first week I picked His Power.  Last week it was His compassion.  This week it's His faithfulness.   This has been a Great Rock for me to stand on.   Also one day I read a devotional and it spoke to me so much about God's ever-present care that I wrote it down, taped it up, took a pic for my phone so I could see it all over the place.  Now you can see it too.

Accept today

Before now I hadn't spent lots of time in the company of those who were feeble or real advanced in age.  Erik is only one year older than me but that's how I'd categorize him today.  Before his 3 seizures he wasn't bounding with energy; but he did swim in our pool only last July.  And we'd often throw the football back and forth in his room.  We teased each other and laugh a lot and sing.  That now seem so unattainable.  I'm missing those times. 

Erik today is very centered on sitting in his chair, holding his Cowboy hat (or football) in his hand, napping, taking his meds, trying to eat and sort of stroking his left leg which, I believe, bothers him often.  He's not in rehab anymore, but moved to the 24 hr nursing care wing.  When I'm there, I'm not sure he's able to connect me with any memories.  But I want to see him anyway, hold his hand, help him in any way I can.  It's hard to know what to do to brighten his day.  I've been playing some of his favorite songs on my phone but now even that doesn't seem to register with him.   I'm learning to accept whatever today gives and that's ok, but not always easy.

This stage of his life is not headed towards recovery.  But Erik continues to amaze me.  The Lord uses him to teach me about compassion and simplicity.  Those who work with him in Long Term Nursing Care every day humble me and fill me with gratitude.  Erik has been loved everywhere he's lived and that's still the case now.  I think certain nurses and helpers get special smiles from him.

Erik really likes this football

I caught him napping this past week with his soft Cowboy blanket.  He was sleeping so well.

If you think of it, please pray for Erik's leg, that the blood clot would be resolved, he'd not be in pain and for him to eat better.   Thank you.

To end on a happier note, let me share pictures of this dude, living life to the full.

Erik dressed as Elvis for a talent show.  I think he sang Blue Suede Shoes. He won first place!  How could he not?

another talent show, Erik giving it his all.

Colorado fishing and Erik hooked a good one.

 Love, Liz

What's going on in rehab?

Happy October, everyone.
Erik's days have been filled with therapists, nurses, visits from family, eating and sleeping.  Sometimes it seems like he does more sleeping than anything else.  One day his weight was needed for some new medicines so he was weighed on a sling scale.  (He's pretty wobbly to stand.)   The machine hoisted him up over his bed and slung him like a big fish.

He's been so tired.  Often I'll find him slumped over in his chair after a meal or during a meal, sound asleep.

One day last week his therapist was getting him ready to go for a walk.  In the hall outside his room, she strapped a belt around his waist to grab onto in case he fell.

She asked me to try and get him to stand up.

I didn't have any luck.  But his therapist did.

Time to rest after all that walking.  Erik's having no problem with this part of rehab.

Last Friday I was hanging out with Erik in the hall near the nurses station and a woman came over and said, "We need Erik for a glamour shot!"   

Here's how he looked. He smiled at her as she took the picture.  So cute.  It was good to see him starting to sit more upright.   Before he was slumping over a lot.  I think he's not in pain as much now, which helps everything.

After the photo shoot, it was time for a walk.  Erik did well.  

I was told today that this morning he walked around the building using a walker for the first time.  They said he strolled around with a huge grin on his face the whole time.  love that.
Quick update:  His picc line has been taken out after 2 weeks of receiving those strong antibiotics.  He is being treated for a blood clot in his leg.  He has developed an upper respiratory infection and is having breathing treatments for that.   Seizures appear to be under control.  He's still not eating well and will not feed himself an entire meal, maybe only a few bites.  His weight is being monitored closely.  Our sister came last week and helped out, which was so wonderful.  All in all, he seems to be stabilizing in some areas, which gives us relief.   This week he will be moved to a semi-private room so he'll get a roommate.   I so appreciate your prayers for Erik and for me, that he would adjust well to all the changes he's experiencing.  And that I would have wisdom in balancing my care for him and in all decisions.

All for now, love from Erik and me.