Is Erik talking more?

I walked in to Erik's assisted living facility today right in the middle of the Sunday church service.  Erik was seated on a couch between 2 ladies who love to "mother" everyone.   He was in great hands, singing and participating.  I pulled up a chair nearby and Erik was so cute, looking over at me and waving in his little, cute way. 


Afterward, in his room, we put away his laundry and just spent time together.   He seemed in good spirits.  He did the usual things, pointed to things in his room he wanted me to notice.  He tried to tease me and succeeded royally. Anytime I can get Erik to burst out laughing I rejoice. He laughed much. At my expense. 


Then he went and got this Dallas Cowboy hat and came over and put it on my head.

So I went and got another Cowboy hat and put it on him and - to my delight - immediately he said, "Howdy Ma'am!"   

Ahhhh, how wonderful to see some of his personality come out in verbal form! 


We were looking at all his medals.  He tried and tried to speak and finally came out with, "I ran track".   I was so excited and pointed out the medal he won at the Special Olympics and put it around his neck.   He's probably wearing it right now at dinner, showing it off to everyone.  I hope so.

New Home, New Friends

This past week has been full.   Erik is moved and settled.  If I had to describe Erik's first week at Elmcroft I'd have to say it went better than we could have predicted.   All this is so new, not only to him but to us too.  Hanging around the staff and residents has been a learning experience and I'm glad to say it's a positive one so far.  Erik is really getting good care.  His hygiene is improving and he's learning his way around.  We're blessed that Erik's dementia doesn't cause him to be angry.  For the most part he accepts the help he's given and the direction he's pointed.

The past few days I've been constantly blessed by comments about Erik from the senior residents:
"He's such a good boy!" - from a woman who used to be a teacher and sort of thinks Erik is one of her pupils.  This woman is the friendliest person I know.  She greets everyone who comes in the door like she's been waiting for you and now that you're there, her whole face erupts with smiles and she's as happy as can be.   Then she forgets that you're in the building and the next time she sees you the process repeats.


"Can you tell me, does he like coffee or juice in the morning?  Because I'm up early and I can help him get what he likes"  - from a 100 year old woman who is always out and about, using her walker - no need for the wheelchair, amazing.  Her sweetness, what a gift.


"Did you know Erik won 5 games of bingo yesterday?!" - from the tall, elegant, slender woman who lives across the hall from Erik.


"He is so sweet!!"  - from the wonderful nurse on staff who greeted Erik when he walked in the door for the first time, hugged him, took his hand and led him to his new room.


"He's not a big talker, is he?"  (haha, no) - this from the nice man who lives next door to Erik with his ailing wife, serving her faithfully.
Erik's been to sing-a-longs, sitter-cise, piano recitals and other concerts.  He's participated in church services, devotionals, music therapy, and more.  If there's something fun going on the staff goes to Erik's room and gets him so he won't miss out, isn't that wonderful? Yesterday we attended the 2:00 church service with him.  Lots of old-time hymn singing.  He's always up for that.  However, Erik can't hold a candle to sweet Dottie. She just loves the Lord and loves to sing -- she just can't stay sitting down.  When she praises the Lord, she has to get up and sail around the room with her joyful, bouncing exuberance...it's adorable!
Yesterday it became pretty clear to us that Erik really no longer knows our names.  He knows our faces.  I keep telling him every time I see him, "Erik, you're my brother".  Sometimes he says quietly, "I know".  It's always good  to hear him say something, even if it's just 2 words.  Today he was trying to say something, not succeeding.  He then pointed to the promotional booklet from his old home, Aldersgate.  He's been looking at it often.  I bet if he could, he'd tell us he misses it a lot.
We're visiting Erik every day for 2 weeks and then we'll taper off our visits a bit.  When we see him he's in a cheerful mood for the most part.  There's been only a couple of times he seemed out of sorts.  I can't tell you how good it's been to my heart to drive away from his home after watching him do something he's enjoyed.  Today when I visited I could tell he's catching a cold and I'm starting to wonder if I've got it too.  Many of the residents have chest colds right now.
When looking for a new home for Erik I had to totally trust the Lord with all the details.  And, minute by minute, I'm still having to put Erik in the Lord's hands.  Worrisome thoughts about the future often try to plague my mind.  But I'm not going to let them. I know Erik's where he needs to be and I know we will see good things as a result. (we already have)  Thank you to all who've been praying for this transition time.  Your prayers have been answered well.  Glory to our God!

First day, looking at the new room.

First day, walking around the dining room with mom and our sister.  Erik has his own special spot here.

First day, finding his way around.  They serve SNACKS here!

First day, meeting people.

Erik loved "sitter-cise".  It was wonderful to see him take to it.

One day during sitter-cize they used a parachute to work their arm muscles, fun!

Last night Erik was teasing my hubby, bopping him on the head with a balloon, then laughing like crazy.

Erik and Mike looking at pictures of his old home.  I know he misses it.

This picture warms my heart.  It was taken last Friday while Erik and I hung out.  He'd had a good morning and there were lots of fun things planned for the afternoon.

I'm hoping my sister will write a post for you to read, describing Erik's move from her perspective.  So, stay tuned again.  Thank you all for caring for sweet Erik.

Saying Goodbye to Aldersgate Family

Last Friday Erik said goodbye to his family at Aldersgate Enrichment Center.  We were worried that he'd have a hard time doing that but to our delight, he handled it well.  He had been told a few days earlier that he was moving close to family and he seemed to accept it with no problem.   When we saw him for the first time he was happy, alert and "present".  So much so, we were wondering "What are we doing, moving him away from here??"   He didn't have the blank, vacant, depressed look he had over the holidays.  Many discussions ensued between my sister and me.  With difficulty, we ended up deciding that a move would probably be in his future eventually and since we had a new place for him all prepared, we proceeded with the plan.

The night before he left, Erik was getting plenty of teasing, hugs and attention.
These days were so special, I have to include many photos in this post.

We kept hearing how much people will miss him, from his Aldersgate family, his church, and the people at the bank who helped him cash his paycheck.  I'm so grateful he was surrounded by many sweet, loving people.   

We packed and loaded his things up on Friday while he spent one more day at work.  When we went to collect him he was working at his station, assembling plumbing parts for Kohler.

Erik really loves having something productive to do.

Everyone took off work a little early to give  Erik a goodbye party, with cake and singing.

Are you surprised that Erik had TWO pieces of cake and even asked for a third? (there was none left!)

Stories about Erik in the workroom started coming up, especially the time he moonwalked.  So we got a moonwalk demonstration!

One last hug from Michelle Thomas, the Executive Director.  She was there when Erik moved in 5 years ago this week.   Michelle, we will miss you a lot.

We hit the road.  Erik was doing well, smiling and singing along (with gusto) to Glen Campbell.  Always amazes me, Erik can't communicate at all but he can still sing because singing uses a different part of the brain.  He just loves it.

Then the DQ stop, and a blizzard.  

Looking back - this move, though stressful, couldn't have gone better.  The next leg of Erik's adventure was moving into Elmcroft Assisted Living last Sunday.  Stay tuned, more to come!

This In-Between Time

Dear everyone,  Hello!  First of all I wanted to say that I was thrilled to see the recent comments on this blog from Jenn and Diane. They shared a bit of their story of having an adult sibling with Down syndrome (the very people I hoped to find through this blog!).  I rejoiced in meeting another person who "gets it", as Jenn said.  How I wish I could have long talks with both of you.


Secondly, it has been an intense few weeks.  I wrote in this post about needing to find another home for Erik and that has been my primary focus.  I'm happy to say we have a new home for him all lined up and even have a move-in date on the calendar.  In less than 2 weeks he'll be living a short drive away in an assisted living facility where he'll get hands-on care, activities, new friends and, of course, more time with moi. 


Now that the decision is made and the papers are signed the days are full of writing lists, purchasing what he'll need for his room, organizing the move, communicating with family members and the staff at Aldersgate, acquiring legal forms, and ... resting.


I feel a bit out of sync, wondering what's ahead, not really knowing what to write at present.  This makes me think of last February when I (very) tentatively began writing about my brother.  Recording the story of Erik has been so helpful for me --- it has allowed me to lift memories about Erik out of my heart 'n mind and send them to ... whoever's out there.   That anyone reads this amazes me and fills me with gratitude. 


Thank you for your prayers for Erik.  Please continue to pray for his adjustment as the move approaches, you lovely friends. 

What mental handicap?

Over Erik's life he's managed to surprise us countless times with things we just didn't expect.  It's fun to think back on these memories now when we're missing the old Erik.    Let me tell you a few unexpected things he has said.

"I think he's got it!"
Many years ago our dad took Erik to get a hearing test.   Erik was set up with large headphones attached to machines.  The technician said "Erik, repeat into the microphone after me."  He'd say a simple word like "window".  And Erik seriously repeated, "window".  This continued with other easy words while dad observed.  Then the technician stopped to adjust the machines and Erik, all of a sudden, got a gleam in his eye and slowly said into microphone, "The Rain in Spain Stays Mainly in the Plain!"   Well that got a round of laughter in the lab.

"Call me cultured"
On another occasion, many years later, Erik was visiting our mom in Colorado.  They were in Breckenridge walking around downtown, enjoying the shops.  They entered a shop with some classical music playing, and before mom and the saleslady knew it Erik nonchalantly said, "Oh! Beethoven."  Well, would you believe it, it WAS Beethoven's symphony playing.   Now, how did Erik know that?  I'd expect him to recognize Elvis, Johnny Cash or a few other artists, but Beethoven?

"Breckenridge needs me"
Well, later that same day after impressing the women with his cultural refinement Erik was feeling pretty good about Breckenridge.  So, as they were walking around, he declared to Mom, "I think I'll retire here!"  Mom laughed and agreed it was a pretty good place to do that.  So Erik found a realtor's office, went inside, and told the realtor he wanted to buy a retirement home.   She played along with Erik and that ended up being a great visit to Colorado for him and for Mom.

 "A man who knows what he wants"
On another trip to Colorado Mom and Erik were visiting a town near her house for breakfast.   They sat down, opened their menus and mom started to read the items to help Erik choose his breakfast.  Erik interrupted her with a decided,  "I'll have the Eggs New Orleans."   Okay, mom was, again, amazed.  We always knew Erik was not a strong reader but when it came to reading the TV Guide or a restaurant menu we needn't have worried about him at all.

There are so many more stories like this I could write. What a blessing to have a someone like him in our family.

Last November it was wonderful to see Erik explode with laughter after he bopped Mike's face with the paper football which he did many times, I might add.

Time to Alter Course

If our lives were a ship, this past week has been a lesson in the practice of changing direction or altering course.  We moved aside all other plans and began the journey into unknown territory.


Last Tuesday night our family came to the realization that Erik can no longer stay in his current group home; he has digressed beyond the type of care they are normally able to offer.   This news is difficult on many fronts, of course.  1)Erik loves where he lives and they love him so that's going to be hard.  2)Erik's sliding further and further into needing constant care, even for the simplest things, and we grieve that.  and 3) not knowing for sure what Erik's needs will be 3-6-9-12 months from now is frustrating.  I want to know exactly what he'll be facing because I like having a plan.


So step one of venturing into the unknown was to start visiting places close to us where Erik could live and be cared for well. We've seen several. This decision is, as I've heard so many say, difficult, emotional, overpowering and draining.  I'm usually fine whenever I'm making decisions for myself. But when you're responsible for someone else large decisions like this can feel so much heavier.  One thing I know, steering this ship cannot be done alone.  I'm so grateful to have the help of others throughout the search process.  His current group home is willing to work with him until we can find the perfect fit for him here in our area, which is a comfort.


All this leaves us with many questions, most with no answers yet.   But the destination right now is:  find a good place for Erik and move him sometime in the near future.   We are praying for the Lord's guidance and I know He will answer.  I would love your prayers for Erik.  


2012 will be an important year, I'm expecting, in our lives.   I confess, I'm feeling quite inadequate.  But I read recently that my emptiness and God's abundance are a perfect match. That the Prince of Peace longs to pour Himself into my neediness. Ok, Lord, start pouring, we need You!

no happy camper, Elvis and hugs

A Joyous Merry Christmas to all of you from Erik and me.

I was in the middle of baking today and suddenly felt like talking to Erik.  Called up the group home and Shirley, one of his supervisors, answered.   I asked how Erik was. She said he's been ok -- up until last night.  For some reason something bothered him in the night and he got upset and it disturbed his sleep. Made me sad. She said he sometimes has these angry episodes at work.  Shirley's his work supervisor and she said you always know when he's upset.  He'll throw things on the ground, clearly not a happy camper.  It doesn't take a long time to talk Erik back to his old self but it's frustrating because no-one really knows what set him off.   I thanked her for helping Erik so well when he's agitated.  Then Shirley told me that she had a special spot in her heart for Erik.   Lord, thank you for sweet Shirley.   


She said sometimes when they're working (assembling plumbing parts) the music will be on and Erik will sing along. But, one time Elvis' Teddy Bear song came on, and.... Oh, she said, he belted it out - singing and twisting his hips.  I wish I could have seen that. Erik has always loved Elvis. Right about then, Erik appeared in her office.  His ears had perked up as he heard her talking to me about him from the next room. so funny.  So I got to visit with him.  He's happy about Christmas coming.


I've learned from Erik's past few visits that being away from the group home is harder and harder for him.  I think many of the residents who live there are the same, they're eager to get back.  When Erik was here over Thanksgiving he appeared very sad. I asked him if he missed Aldersgate and he nodded.  I told him he was going back real soon which made him visibly happier.  


 Returning Erik after his break, my hubby and I unpacked his case in his room, spoke to the weekend houseparent on duty.  We stepped outdoors to go see what was happening at the other house.   Outside in the other yard we saw Penny and Roxanne (2 residents) walking the dog.  Well, Erik started RUNNING over to Penny with his arms outstretched wide, and Penny smiled real big and RAN over to Erik with a huge hug....it was like watching a scene from a movie!  (note: Erik never runs anywhere; his normal speed is slo-o-o-w)  Penny hugged us real hard and told me, "I watch out for him, I always make sure he's ok".  Oh Lord, thank you also for Penny, the "Little Mama" of the group home.  Delight to our hearts.

Erik and Penny, taken in '08.

The Pajama Showdown.

Five years ago Erik lived with us for a while.  During that time I noticed he needed new pajamas so I bought him a pair at Target.  Here he is, happily wearing them for the first time.

Erik has really become uber-attached to these pj's.  They are all he wants to sleep in summer or winter.   The inevitable has happened.  They're getting worn out.  The bottom part of the pants (the part he sits on) are wearing thin.   Erik has not been aware of this and really doesn't care. He's not jumping up and down to retire this pair because we've tried.   Last week when he was visiting us I saw how bad the bottoms were and decided that I just had to try again.  I went shopping hoping to find a set, a pair of matching tops and bottoms because that would be similar to the beloved set.  No luck.  So I bought a new pair of striped pants, ones he could wear with the current button-down top.  I knew they weren't a perfect match but....in order for Erik to like them they'd have to be exactly like the ones he had and there's no way I'd find exact replicas.

I brought the new pants home and put them on his bed.  He found them later, took them in his hand, came to me in the kitchen and... just looked at me and looked at the pants.   Me: "Oh Erik, those are your NEW pj bottoms."  He wasn't smiling.  I took them back to his room and friends came over so we got busy.  Later after friends left I mentioned to my husband that I bought Erik some new pj pants.  Erik was listening and after a bit he got up and walked to his room.   We heard the door close.   Hubby and I wondered what he was up to.  I had a suspicion, and it wasn't that he was joyfully trying on the new pants, which, by the way, I had spent an hour hemming!   He emerged wearing: yes, you guessed it, his old trusty pj's.   I guess he thought if they were on his body they weren't goin' anywhere.   oh boy.

I took him to his room and we had a talk.  "Erik, I know you love these pajamas, but there are holes in the back of them."  Erik (aghast) "Where?"   I touched the holes.  He could feel my fingers, I know he could.  I took his own fingers and showed him where the holes were.  I said the new pants would be just great, and he could wear the old top with them and it would be so-o-o-o nice.   He crossed his arms and glared at me.  Then he shook his head at me, unblinking.  Erik's verbal ability is limited but he needed no words to get his message across.

ok.  what to do.  We both went back to the living room where hubby was.  He asked how it was going and I said quietly that we were going to have some issues.  Erik was silent, and tension was present.   Then he got up, went to his room. We heard one door close, then another door close.  We waited a bit and hubby went to check on him.  Then I heard hubby say, "Erik unlock these doors right now."  He promptly opened the doors (thank goodness) came back to the living room, all content and cordial and even gave me a thumbs-up, like all was A-ok.  Hmmmm.

We sat there a while, continuing to watch a Toy Story movie, and suddenly, I knew.  He had done something with the dreaded new pj bottoms!    I whispered my suspicion to hubby and after a bit he went to look for them.  He found them, alright, hidden in the back of the closet.  So, that's why Erik was flashing me the thumb's up.  He took care of the problem and thought "no more ugly, new, bad bottoms for me!"

Hubby took them and put them in our room and the next day when I packed Erik up I put them in his suitcase to take back to the group home.  We chose not to fight this battle with Erik.  In the scheme of life it's a little thing.  But as his family we want him to look well-cared-for and as well-groomed as possible.  Worn-out pj bottoms don't do that.

Erik is resisting change with a vengeance and who can blame him?  A person who suffers with Alzheimer's needs regularity.  I bet at this moment he's happily wearing the old pj's and doesn't care at all about the holes.   I only wish I'd bought a spare pair of those pj's that day in Target 5 years ago.

When I unpacked his suitcase back at the group home, I hung the new pants on the hanger right next to the old ones.  I wonder what he's done with them.

Erik still happily wearing them this past summer.

the power of an encouraging heart

Today I ran across an email one of my friends sent me 4 years ago.  She found a story

about a Down syndrome boy named Johnny who worked in a grocery store.

my friend's email that day said:

Thought you might enjoy this.  Made me think of Erik.

You can make a difference~ no matter who you are or where you are!

click HERE and be inspired.