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.   

Good Things

Well, what can I write today about our Erik?  There is much for me to be thankful for.

-- Erik has been moved to a private room.  The staff in the new hallway has taken to Erik well, I think they liked him right away.

-- he's still receiving the strong antibiotics via his PICC line twice a day and the meds seem to be getting the job done.  Only has TWO more doses to go.  

here's Erik last week, receiving his meds, in his new VIP private room. :)

-- Over the past weekend, Erik's PICC line entry site somehow became agitated and it got all bloody.   He got new bandages and dressings and endured it like a champ.

--  Erik was shaved today and I didn't have to do it.  Someone did it while I was home for lunch and he looks great.  Whew.

--  We haven't noticed any new seizures. 

--  Before church yesterday I was blessed enormously by a woman who's a patient in the rehab.  I first saw her last week when Erik was residing in the other hallway.  She was sitting in a wheelchair, just being still.  Her face was bruised everywhere and there was a large swollen goose-egg on her forehead where she had fallen, truly heart-wrenching.   Yesterday as I was wheeling Erik around the building I heard a woman quoting Bible verses out loud, purely for her own benefit -  promises from God.  It was her, the same lady, her bruises still there but much less visible.  I was amazed, kept walking but then doubled back and went over to her, leaned down asked her to tell me her verses.  She proceeded to quote verse after verse: of God's faithfulness to answer when we ask Him, of believing and of His goodness.  I'll never forget that. 

-- Another wonderful thing happened this morning.  I got there later than I wished due to some workers in our home. On arriving I noticed Erik wasn't in his room, so I looked in the therapy gym and he was there.  He was at a bike machine, but his therapist immediately, excitedly pointed to another therapist nearby and declared that I HAD to go see her video of Erik.  I was eager because clearly something good had happened.  I went over and she showed me a short video of Erik WALKING around the halls!!!  Not just a few steps but a long walk. He was going going going! Wow! They video'd it for me since I missed it.  Oh~yes!  With his helpers at each side, Erik walked around 2 and half hallways, got tired, sat down and made those therapist's day.  And ours.  Erik hasn't really walked upright since before Labor Day.   Let's hope for more mornings like this for him.
here he is (sorry, I know it's blurry):

-- Erik's future has been so uncertain to us in these past few weeks, much mental anguish going on in our minds.  But after his therapy this morning we were in his room while he was getting his IV meds and the nurse from his assisted living facility walked in.  Wonderful to see her!  She told me how much everyone missed him and that they all want him back.   She helped me to not be so worried about where he'll be when he leaves the rehab, shared with me with options that are available right in current assisted living facility and I felt better.   She also told me about a woman who lives there who lives down the hall from Erik. A woman I really don't know at all, she doesn't leave her room much.  But she has really taken a liking to Erik, it seems.  She would DOTE on him, I was told today.  She'd help him at mealtimes, making sure he had all he needed.  Ah, so sweet, and I never knew.  Well, since Erik's not been there for over 2 weeks this woman is missing him so much she's sitting IN his chair at meals with 3 old men -- who are not the cleanest of eaters.  Well, we need to get Erik back there so his adopted mom can give him ALL her love.

still to work on:  Erik's not having the best appetite.  We think he's losing some weight.  Some meals he's interested in food and others he just wants to sleep through, even when bribed with chocolate ice cream.  

All for now.  Thank you again for your care for Erik. We know many of you are praying and we value that so greatly.

Rehab

I last left you when Erik was getting adjusted to life in the Rehab nursing facility.  He's been there 5 days and it's a busy, focused place.   Some impressions:

Wheelchairs.  I wish they could recline like Lazy Boy chairs.  Erik would like to nap.

Therapists.   They are sweet people.  Sweet Sweet Sweet.  They want you to improve and patiently nurture you to try.  They are becoming dear friends.

Nurses.  They have been our comforters and friends too.

Doctors.  They appear and help and get things done.

Favorite hats:  Erik was a little out of sorts until I brought his Dallas Cowboy hat to him.  He holds it and looks at it most of the day and it makes him happier.

Rehab Residents:  Those who need healing are all around us.   Whether their wounds are visible or not. 

Location:  Having Erik 5 minutes away from our house is a God-send.

My Heavenly Father:  The One on Whom I lean all day long.  We need Him.

When Erik first entered the rehab I wasn't sure I liked it at all.  It was so busy but no one was helping us learn the ropes.  I know now that there were many people being checked in that day and only so many people to go around.   After a few days there I've seen how Erik is being cared for my opinion has changed.  A speech therapist helps him eat his meals.  An occupational therapist does too.  A physical therapist helps his muscles work.   Even when Erik's in pain, they find a way to help him progress.  And he was in pain yesterday.   A skin infection developed an abscess on it.  That's not good.  I was in Erik's room when a new doctor came in, looked at it and made things happen.  Erik needed stronger antibiotics and quick.   A PICC IV was put in his arm, threaded close to his heart and medicine administered.  He'll continue to get it for 7 days.  This morning when I saw him I already noticed improvement.  Praise the Lord.   

He is reluctant to feed himself.  He gets tired. Or can't remember how. It's sad.  But that's a goal to work on.  He's having a hard time holding his head up.  Heads are heavy, especially when you're tired.   Many people there spend their days in wheelchairs, like Erik.  I understand now why they look so tired.  They are working hard just to be sitting and their body healing.  When I see other elderly people using walkers to get around, I find myself thinking, "Wow, that person's so strong!!".

Erik is becoming a sweetheart to the staff.  Sometimes when they walk by you can hear him say "Hi!"  He smiled at me more today than in the past 5 days. That was a treasure to me.  

  

A Labor Day I won't forget

I have meant to write for a long time but there has been no time.  One week ago, (as I was told) Erik was sitting in his dining room around lunch time and it seemed he started feeling strange.  He rose up from the chair as if he was going to stand and then fell, full force, face-down and started to have a 30 second grand mal seizure.   A little background:  This was his 3rd seizure in 5 weeks.  It followed one 8 days previous where he, again, fell on his face and possibly fractured his nose.  All three seizures have necessitated trips to the Emergency Room.  Cat Scans were done each time with no problems found to his neck or skull.  Since these seizures began I'd started noticing that Erik wasn't mentally as present.  Eating became confusing for him.  Walking began to be a chore.  It has been hard to know if Erik's in pain except by visual clues.  If you ask him "Erik, do you hurt anywhere?" he always answers "no" or won't answer at all.  As you can imagine, our desire to get to a neurologist was high.  I had 2 different appointments for him lined up - with 2 different neurologists, trying to find one who could see him the soonest.   Then came the strong seizure the day before Labor Day.  The next morning all he would do was sleep deeply.  We could hardly rouse him.   Something just wasn't right, he had no interest in food.   So we drove him to the ER to see if there was any chance a neurologist could see him.  Thankfully they admitted him and he was seen the next day.

Here is a picture of him that first day in his hospital room.   His head was very scraped by his fall and he had tubes and noises all around his hospital bed.  He put up with it all amazingly.  Better than I would have, for sure.  He was in a special bed that was filled with air constantly -- so the noise was like sitting next to an engine in an airplane.

The following day he was given an EEG in his room.  The technician had to attach a ton of sensors on his head, face and chest.  Erik was supposed to lie still and not move his head.  If only he'd been sleepy during this test!   He moved his head quite a bit but they still got the readings.  Results came back normal.  The neurologist had already decided that Erik needed anti-seizure meds, just as we hoped.  The initial dosage made him extremely drowsy so the dose was lowered and we're now watching to see how he does on it.   
So then it seemed like weeks passed, but really it was just 5 days/nights in the hospital, waiting and watching.  We were blessed with exceptional nurses and staff.  Family took turns staying with him all day and night, except for the last night...we knew by then that he'd be cared for very well and he was.  Finally it was time to be transferred to a rehab nursing facility that happened to be near my home.  Erik got to ride on a stretcher in an ambulance. 

sitting up after laying in bed for 5 days feels good.

We're so eager for therapy to begin so Erik can hopefully regain his strength.   He seemed to lose so much of himself after each seizure.  Erik fed himself a little bit while in the hospital but mostly we had to feed him.  Also, he seemed so weak.

First day at the Rehab center,  getting settled in.

That night dinner was brought to his room and he made me so happy by taking the ham and cheese sandwich and actually lifting it to his mouth and biting it.  Hadn't seen him do that in so long.  Erik entered the rehab on a Friday afternoon and sadly, the therapy won't begin until Monday so we spent the weekend of checking on him, trying to make him comfortable.  I feel like I'm not succeeding at that very well.   He's usually sitting in a wheelchair when he's not napping in his bed.  Tonight my daughter and I tried to shave him.  We will never be able to earn a living shaving men's faces.  We ran out of shaving cream so he ended up with patches of skin and patches of whiskers everywhere--oh my goodness.   

save me from my sister's shaving

I hope you can't tell what a terrible job I did, but I know Erik forgave me.

A male care-giver came to the rescue and took care of the mess we made.  He finished the job for us but I forgot to take a picture of his whisker-free face.  You'll have to take my word. 

Ahhhh, deep breath.  Rehab starts tomorrow.  Please pray Erik responds well and his body and mind heals, for good rest and that we know what to do to give him the best quality of life going forward.  So many friends and family have kept Erik in their prayers.   How can we thank you enough?  The Lord keeps reminding me of His love for Erik, of His constant protection and provision.  Erik is his child and He is his Good Shepherd.  Thank you for reading and caring for my sweet brother.

Erik's imprint

 I've mentioned before that Erik worked for 27 years at a hospital in our hometown.  When he started to show signs of confusion we knew his well-earned retirement was approaching.  So we made plans for that next phase of his life, which I've written also written about.   But I've never shared with you the newspaper article the Dallas Morning News ran on the occasion of Erik's amazing retirement party back in 2007.  I've gotta remedy that right now.

 A reporter wrote the following about Erik:

Saying goodbye and good job

-- After 27 years on the job, hospital worker is showered with gifts and respect.

  While his father saved lives, Erik Barret touched lives.  They worked at the same hospital, the father as a pediatrician and the son as a utility technician.

  Mr. Barret spent 27 years at Baylor Medical Center at Irving.  He rarely missed a day.  He loved his job,  And he always wore a smile.

  Now, he's moving on.

  "When I retired about three years ago, Erik told me he thought that maybe he should retire, too," said Dr. Walter Barret, who was on staff at Baylor Irving and Children's Medical Center in Dallas for 43 years.  "It's just the time for him to leave."

  His eldest son is only 46 - an age that's young for retirement, but a milestone for someone with Down syndrome, a genetic disorder that causes varying degrees of mental retardation and physical problems. 

  "When he was diagnosed, the doctors asked if we wanted to put him away,"  Dr. Barret said.  "Not much was done back then for children with Down syndrome."

  But he stayed with his parents and quietly shattered stereotypes.

  Mr. Barret learned vocational skills at Helping Hands in Irving, which is now Our Children's Center.  He ran track and became a good bowler.  He graduated from Notre Dame School in Dallas.

  And for more than a quarter of a century, he's been a dedicated employee.  His tenure at the hospital surpasses most staffers in his department.

  When his supervisor wanted to give him a break during his last week on the job, Mr. Barret was offended.

  "He didn't want anyone helping him," said Al Gibbs, director of Environmental Services. 

  In his blue uniform shirt, Mr. Barret beams with pride.

  "Erik is such a success story," said his father.  "Where many people just meet their potential, he has exceeded his."

  Mr. Barret's co-workers wholeheartedly agree.

  Doctors, nurses, administrators and staffers stopped by his retirement party last week to say goodbye.

  Hospital chef Ed Perrotta prepared a wide array of dishes for more than 200 guests.  Bags of M&M's and Skittles served as centerpieces.

  Mr. Gibbs presented gifts to his wide-eyed employee.  A big Dallas Cowboy fan, Mr. Barret received a basket of team goodies and a stereo unit and headphones.

  Even the city pitched in to honor Mr. Barret.  Mayor Herbert Gears sent a proclamation stating that Jan 31, 2007, was Erik Barret day in Irving.

  The guest of honor didn't blush as his friends applauded loudly.  He just grinned.

  Many guests were teary-eyed as they hugged Mr. Barret goodbye.  They wished him well and said he will be missed.

  "Some people leave an imprint that will never be replaced,"  Baylor Irving chief Jim Thaxton said.  "Erik is one of those people."

  "I love him a lot," said Sharon Martinez,  Mr. Barret's favorite nurse.  "He loves to sneak up on me and tease me.  Once he leaves, it will be hard.  He always smiled and waved at me."

  "I'm so proud of Erik," Mr. Gibbs said.  "He has such a strong commitment to the hospital. and he's very versatile."

  "I sometimes mop and clean the stairs," Mr. Barret said.

  The oldest of four, Mr. Barret was born in Memphis, Tenn., but came to Texas with his father's job. When he started at the hospital, he lived in a group home in Dallas.  For the past two years he's lived behind the hospital.

  "He loves being independent," Dr. Barret said. "He can manage everything but money."

 Now it's time for a change.  Mr. Barret will move to a group home on 160 acres in Brownwood, where he will still be able to work.

  While sad to leave his Baylor family, Mr. Barret says he is excited about his future.

 "I'm going to the country," he said.  "I'm going to have new friends."

I know I'm a proud sister, but wasn't that wonderful?  God's blessings abound.

Today when I was in Erik's room he pointed to this article (hanging on his wall) and looked at me, wanting me to comment on it.  I said, "Yes, Erik, that's YOU in the newspaper article.  You worked at the hospital."   He points to this article almost every single time I visit him.  I'll bet he shows it to everyone else who comes in too. 

Thanks for reading and have a wonderful week.

Erik doing a great job at the hospital.

Expectations adjusted

I can't believe that it's been 6 months since Erik moved from the group home in central Texas where he lived for 5 years to an assisted living facility nearby our home.   Talk about time flying.   We've settled into a rhythm and I still see Erik several times a week.  When I'm not there, he's constantly on my mind.    His sweet nature has been such a bonus during this time except that lately I've been wondering if we're headed for choppier seas.    Several times over the past 2 weeks, he has been angry, even uncooperative, and it's so hard to know how to help him. 

This has been a lesson in faith for me as I visit Erik.  Expectations need to be adjusted.  My thoughts:  How will he show his displeasure to me today?   Usually it's when I have to leave him.  One day it was while I was putting his clean clothes back into his dresser.  The worst is when we have to take him back to his home, he's been refusing to get out of the car.

I took our sister's dog to visit him twice.  Another visit we did some crafts together.  Another visit he enjoyed teasing Mike.  During all these visits we had moments when Erik was laughing and seemed happy but he'd change suddenly and he wasn't anymore.   Tough love was easier when I was teaching my own kids to cooperate.  Alzheimer's is giving me many lessons in tough love.

Yesterday I visited during the morning and he was sound asleep.  He roused once, blinked real big and saw me sitting there but couldn't fight the sleep, he went back in for another nap.  So I left knowing I'd be back today to collect  his laundry.  Today I found him and boy, he seemed like a new Erik!   Smiling, even speaking a bit.  I was rejoicing inside, he really seemed content and wouldn't stop smiling.  Thank you Lord.   But that smart guy just knew when I was close to leaving and he had a hard time again.  But I have faith that we are going to get through all these new experiences and Erik is going to be ok.  God is faithful.

no more smiling, at least for now.

From earlier:

Erik and Benji

Erik and Benji again, this time after Erik's accident,

We strung beads and hung them from his window so the sun shines through.

Watch out, Erik's about to tickle you.

One of those calls in the night

Early this week we had quite a scare.   Monday morning at 4:45 my cell phone rang next to the bed.  I looked at the number, didn't recognize it, and let it keep ringing.   A few seconds later I had a voice message, so I sleepily listened and then became wide awake.   The call had been from an ambulance driver telling me that Erik was being transported to a hospital nearby.  He had had a seizure and fallen on his face and the residential living facility thought he should be sent to the ER.  While getting dressed and trying to wrap my mind around this, a caregiver from Erik's home called to tell me what had happened.  She said as a result of the fall, he'd cut his face and was bleeding a bit on his head.  When we arrived at the hospital Erik had been taken for a CT scan.  He was wheeled back into the room he seemed confused, dazed, not sure where he was or why his head hurt so badly.  He kept holding his forehead and scrunching up his eyes in pain.   There was an IV in his arm which he really didn't like.   The ambulance guys came in and told us he was alert and awake on the drive over there.  After he arrived, the doctor ordered blood work and cleaned up his contusions.  Good news, the Cat Scan and blood work results came back negative, no abnormalities.  I asked if Erik could be given something for his headache and that was done.  And then we were free to leave.  We were to watch him for symptoms of a concussion and let them know if anything else happened. 
So that day ended up being a long day of tending to Erik.  Poor guy, he was not himself, in pain and very tired.  Pain meds eventually helped, as well as food.  (you know that always works for him.)  Many dear friends were lifting him up in prayer.  As the day progressed I began to see his bottom lip swell up, like he'd been punched in the mouth.   When he fell, he must have cut it too.  He started looking more and more like Chuck Norris had had a swipe at him.  I tried to tease him about that but he wasn't in the mood.  I didn't blame him.


Thankfully, the next day he was back to his normal self, laughing, teasing the people at Elmcroft and me.  Ahh, I felt like I could let out my breath a bit.  Today I'll take our sister's dog with me to visit him, he'll love that.

The day after;  tough on the outside, sweet on the inside.

I know that older Downs are susceptible to seizures.  So the news that Erik had one didn't come as a surprise to me.  We've wondered if Erik is experiencing some dizziness lately.  We'll be keeping a watchful eye.  Do any of you know of older Downs who experienced seizures?  I'd be so grateful to hear about it.

Special Olympics

In honor of the 2012 London Olympic Games I decided to share these 2 pictures of the Olympian in our family. Erik participated in the Special Olympics when he was growing up, back when the organization was in its early days. I wish I could share more details about his involvement but don't know much about it. I do recall he traveled to New York State to compete and I believe that's where the first picture below is taken. I also know he competed in track and field and later, in bowling events. 

Erik, on the right, with his medal.  I think he still has that medal in his room today.

I looked up the Mission Statement of the Special Olympics and loved what I found:
The mission of Special Olympics is to provide year-round sports training and athletic competition in a variety of Olympic-type sports for children and adults with intellectual disabilities, giving them continuing opportunities to develop physical fitness, demonstrate courage, experience joy and participate in a sharing of gifts, skills and friendship with their families, other Special Olympics athletes and the community.  

Erik personified the Sp. Olympics mission:  demonstrate courage and experience joy.

For years Erik would proudly tell everyone he met about his Special Olympics experience.  What an amazing organization.  (Here, link to their website.)