He Feels Loved, That’s All That Matters

On the drive home, I kept reliving our visit.  Whenever I’d  start to cry,  I couldn’t forget the fact that I couldn’t make him as happy and secure as they do at his new home. The minute I walked in, I saw nurse Sandra.  Wringing my hands, I said, “I’m here for my first visit.”  “He’s in there.”  she said, pointing to the activity room.  “It’ll be ok.  But you can’t go in like that...not with your hands like that.”  Holding my breath, I turned and  walked over where all the residents were sitting.  Jetti was singing Amazing Grace.

I peeked my head around the corner and saw Jerry, with his hair combed, dressed in his dark blue pin striped shirt,  sitting with all the women.  He looked up and over.  When he saw me he immediately, with outstretched arms, began to make his way toward me, wailing,  “Ohhhh!  Ohhhhh!”  I wrapped my arms around his shrinking waist and I could feel his ribs.  We were beyond control with tears and I could hear the nurses saying, “You’re going to make me cry.”

In her loving way, nurse Jetti came over and gently  wiped away Jerry’s tears and led us down the hall to Jerry’s room.  Then, just as the emotion started, it stopped.  He took me into his room and began to babble all about....I don’t exactly know what.  As I watched him, I thought to myself  how much he had declined and that I had placed him here not a minute too soon.  Yet,  we were both glued to each other’s sides, while  he continued to try to talk.  Even through his occasional tears, I could see how happy his countenance was.  I could never have kept him this happy and secure.

Not knowing what to say,  I opened a Coke and took  him over to the pictures on the wall, where he instantly recognized our youngest, Katie.  I made small talk, reminded him of his friends who loved him, and each time, he’d get a little weepy.  I asked, “Do they take good care of you here?”  He said, “Oh yes!”  then went on the babbling trail again.  I think he was trying to tell me about the good people there.  Like an anxious child, he kept trying to climb in my lap, so I laid down beside him trying to hold on for a little longer.  But, within a second, he was up looking out the window at someone passing by.  Not knowing how I would end the visit, I said, “Well, I need to run some errands.  I can pick up some Cokes and bring them back.  Ok?”  He said, “Ok.”

He grabbed my hand and walked me to the nurses station as if he wanted to introduce me.  Smiling, he said,  “They like me.”  They happened to be folding his clothes and  they began telling me how he loved to dance and hear music.  I knew he was in the right place.  I knew he was happy.  And, in spite of the random tears, I knew he felt loved and that’s all that mattered.

Today’s the Day

.....that I wrap my arms around Jerry, feel is soft and furry fleece and see those big blues.   I’m going to want to squeeze and not let go.  Help!  Don’t know how I’ll respond.  Can’t fall apart because he won’t understand and that will confuse him.  Our doctor says he’ll have no concept of time and won’t realize how long it’s been since I’ve been there.  She says I don’t need to feel obligated to stay long. YEAH RIGHT!  They are probably going to have to tear me away!

Hold On! Hold On!

I haven't left yet.  I'm still winding down.  Can't say good bye to everyone at once. Kathy wrote me yesterday saying that Jerry is adjusting really well.  Said someone came in over the weekend with a karioki machine and they sang for several hours.  Said Jerry came in and was snapping his fingers and knew the words to most every song.  Said he and Jetti, the nurse, sat on the back porch where he stretched out his long legs and seemed to be relaxing.  Those are all good signs.  Today, I called Rodisha.  She said Jerry is doing fine and is laughing and cutting up.  Unbelievable.  They must be absolutely wonderful!

My sweet grandchildren were all very sick with the flu so I decided to cut out early and head for home.  We “old people” don’t rebound from the flu very quickly anymore.  It’s my first time home ALONE since Jerry left.  The silence is deafening.  Seriously, I have a tad bit of a hearing problem and I think I should be hearing noise, talking, shuffling, tv......but everything is silent.    Kind of weird.  I can’t be too sad because I know Jerry is happy.  So, I’m trying to focus on the positive.  YOU!

The blog will be ending shortly, but several people have commented that  I should continue my blog....at least for a little while.  ...  that some people may want to know how one copes after separating from your other half.  I am happy to share, but I don't want it to be a "woe-is-me" blog.  There truly is hope and a future beyond this terrible disease.  Eventually there can be a smile even though the other half of you is missing.  Trust me, if I slow down and allow the melancholy to move in...it surely will.  I’ve found myself with an insatiable need to be productive.  Focusing on my next move “career” wise into stock illustrations and expanding to more locations, keeps me moving forward.  Even sitting for over an afternoon with my little grand babies, I can feel myself losing momentum and spiraling downward.

My entire adult life has been focused on taking care of my family and my soulmate has been Jerry for 41 years.  I still imagine him right beside me, but see that he isn’t there.  There is consolation is knowing that he IS STILL LIVING AND HAPPY even though he is not with me.  Sort of like separate vacations....which we never took.  Hmmm.  Wonder what it will be like when the vacation becomes long and drawn out.  I guess we’ll find out.

For now...I guess he’s  still on one of those “business trips”.  I’m going to see him on Monday.  Yikes!  I’ll keep you posted.  Let’s hope it goes well.  If it doesn’t, I’ll be crying my eyes out to you.

Winding Down

It's been one year and 228 posts.  Sending out our journey has brought so many rewards, especially you.  I would encourage journaling to everyone.  One day, I'll go back and read this documentary, but the feelings are still way too fresh.  I've never reread any post.  The words have come straight from my heart at that moment in time. My son and son-in-law have encouraged me to paint when I go "deep inside".  However, when I am happy, I am visual.  When I am melancholy, I'm verbal.  Who knows, one of these days, I may  "go there" on canvas.

I spoke with the nurse this morning and she told me she thinks Jerry is starting to miss me.  She said he is the nicest man.  I'm so glad they can see his heart.  She also told me that they've discovered he likes to help.  She dropped some spoons and he said, "I can help with that."  She said, now that they realized he likes to help, they will solicit his help whenever they can.  That makes me cry.

Mark left today.  While riding around killing time before heading to the airport, we were trying to think of a place for lunch.  I stupidly said, "We can go to Sawmill Taproom."  (That was one of Jerry's favorites.)  He said, "Without Dad?"  Those tears we had held inside for days, came busting out.  Both of us.  I couldn't even drive.  After composing ourselves, we braved another restaurant and tried to focus on our futures.  This is the beginning of the rest of our lives.  Things are looking up!  It was a terribly hard goodbye this time.  It was a day of missing our husband and dad.

The interesting part is that my missing him is missing our healthy times.  Times before this last decade.  It's like the last 11 years have been a lapse in time.  Disappeared.  If I were to go try to bring him home, it wouldn't be the healthy Jerry.  That Jerry is never coming back.  So, I think I'm almost ready to see him again at Homeplace.  It will remind me that he is where he needs to be and that the Jerry I miss is gone.  This is another Jerry.  One that I can go see and love and leave and go see again.

I'll be winding up the blog in a week or so.  It's important to move on and I don't think any of you need to read my grinding ups and downs.   Just know that if anyone you know would benefit from this blog, please feel free to share.  If anyone you know needs someone to hold their hand on their journey, I am available.  I would be honored to be of service.

So, for now, it's time to go.  (I've got to get my car inspected.  Ha!)  Thought that would end us on a good note today.

Little Epiphanies!

In the mornings, I call Betty at his new home.  She’s the nurse in charge of the memory unit.  Got to check on my honey, you know.  Being with my grandchildren is a whole different experience now.  This morning, I played football with Fletcher and the dogs.  We had our art lessons and I just finished playing “store” with baby Mac.  I feel like my old self is coming back.  This is my first time being with them without having to keep a third eye on Jerry. Betty says, “He’s doin’ good.”  “He’s eatin’ well and got to go on a bus ride on Saturday.”  He’s been sleeping at night and they leave the light on so he can find the potty.  He’s  displayed no anger.  Whew!   Today, she was going to take him out of the unit  to play bingo, but he began asking about me, so she decided not to.... thought he might try to escape.  The folks in the memory unit, once they have become adjusted, are taken out to participate in all the activities with the other residents.  They have morning coffee, bingo, go on trips to museums, plays, rides around town.....more than he did at home.  Yesterday he had a coke,  his favorite snicker bites and a pack of Oreos.  She said I’m going to  be amazed.

In the meantime, I'm having these little epiphanies. Yesterday, I was driving down the road when I noticed the radio was on.  Music.  70's music!  I turned it up loud and began singin' along.   It was a little epiphany!  If I wanted to turn left, I could.  If I wanted to turn right, I could.  It was a little epiphany!  Then, last night, when my daughter and I were driving home, I got a little warm.  I rolled down the window.  The cool air blew in so strong.  It was wonderful.  There were little epiphanies all over the place!   I could make a phone call.  I could make an appointment.  I could walk into a room, then change my mind.   I could roll on the floor with baby Charlie.  Epiphany!  Epiphany!  Epiphany!

Our life was so restrictive and I didn't realize it.  We had simplified  so much that I kept every distraction to a minimum.  Now Jerry is where he can have his safe world and I can be spontaneous.  It truly is a new beginning.

Waiting for the New Normal

It’s been since Friday that I’ve seen  Jerry.  Let see.  That’s one, two, three, four days.  In the past, a couple of days meant nothing because I knew he was on a business trip and would soon be coming home.  This time he’s not.  I don’t like it.  I don’t like it at all. Saturday morning, Antoinette, the nurse called and said Jerry was doing just fine.  He had a good breakfast and was watching TV in the activity room.   That gave me the relief I needed to start the day.  I think we were all in a state of  “don’t know what to call it”.  The girls and I sat on the sofa in our pajamas until 4:00 in the afternoon.  We sat in stupid chatter, then silence, then stupid chatter, then silence.  Mark walked the beach with the dog and slept.  It wasn’t until we realized we had been invited to a friend’s house that we decided we’d better get up and take a shower.

It’s funny how the mind works.  Someone asked, “Have you called out to Jerry, yet?”  As a matter of fact, I have.  We were all in the kitchen fixing something to drink, when Mark headed down stairs.  Without realizing it, I said, “Jerry.  Would you fix Amanda something to drink?”  I caught myself as everyone turned and looked.  I didn’t talk ABOUT him, I talked TO him.  I’ve  also have found myself having memories of when he was healthy.  Not when he was sick.  The have flashbacks of how handsome he was whenever we would go out to a fine dining restaurant  and what a statement he made as he’d walk across the room in his yellow silk sports coat and blue striped tie.

I called Homeplace today to see how he was doing.  He was beginning to ask where I was.  He asked nurse Gerry, “Where’s my wife?”  Gerry’d say, “Oh.  She’s at home cleaning the house.  She’ll be here in a little while.”  That seemed to be all that was  needed to satisfy him.  Then, he’d continue to walk on.  As for me, I am terribly afraid to see him for the first time.  I’m waiting until next Monday.  I’m afraid if I go now, it will open the “sad" wounds all over again.    I know I’ll want to bring him home.  But I won’t be able to.

It will take a while for us both to get adjusted but that there will still be good times, just in a different way.   But for now, I’ve been advised to keep the kleenex handy while I wait for the new normal.

At Home

We all slept in until 9:00, then randomly gathered in the kitchen for breakfast.  My kids decided to cook breakfast while I took Jerry back up to get dressed.  Funny how there was nothing in my kitchen to cook; no eggs, a half of handful of cereal, about 1/3 cup of grits and some chocolate bread that someone sent over..... It took a while to get Jerry ready and while we were together I told him, “Jerry.  Today’s a special day.”  Looking into his large, unfocused blue eyes, I said, “Remember how we talked about getting help around the clock?  We are going there today.”  He said, “For how long?”  I said, “Until the doctor says it’s time to come home.  Mark and I are going to fix up your room and the girls will bring you to meet me.”  Still staring into my eyes, I continued, “I need you to be brave.  We both have to be brave.....for our children.”  Nobly, he said, “I’ll do my best."

It was perfect that Robert, his beloved companion, came with us to set up the room.  He brought his walker and sat in the corner while Mark and I arranged furniture and placed pictures on the walls.  We raised the  blinds to let the sunshine in.  Tom, the maintenance man, Kathy, the director, and Gerry, the nurse, checked in periodically to bring in smiles that gave us a mental reprieve.  Kathy made up the bed and Tom hung Jerry’s hatrack with two Carolina hats on it.  Once the TV was hooked up, Mark put on an old Alabama game.  Then the phone rang.  It was the girls, “We’re three minutes away."

Oh God, panic time.  As I stepped  into the main hall, I saw three silhouettes walking toward me.  I could see Jerry’s long arm waving at nurse Gerry.  The girls were fighting back the tears as it was the first time to see Homeplace and they were facing saying goodbye.  I greeted Jerry with a huge hug and said, “Look, Jerry.  Let’s show the girls your room.”   When we entered the room, he  saw the painting of us and of Montana over his bed, and Mark showed him his is chair.    Then he  smiled and his eyes lit up.  It was if the stress rolled off of his shoulders indicating, “I’m home.”

Mark said, “Look, dad.  The Alabama game is on.”  Jerry stepped over to the chair and began to the hear the excitement of the crowd as the crimson tide played on the screen.  A few minutes later Gerry brought in Barbara, one of the other residents.  “I wanted you to meet Barbara.  She lives here.”  Jerry, in his usual gentlemanly fashion, got up to take  her hand.  With a delightful smile,  she said,  “Don’t I know you?”  He said, “I’m Jerry.”  Then she turned to me, “Don’t I know you?”  I said, “I am Sue.  Do you give hugs?”  We hugged and Mark said, “Do you know me, too?” and gave her a hug.  Then they left.

After about 20 minutes of togetherness, we were all beginning to feel it was about time to leave, but reluctant to do so.  The bed was made, the game was on, the pictures were hung; his bite size snicker bars in his drawer.   All that was to be done was finished.   Then, as if it were a Devine sign, Jerry’s eyes caught sight of the hatrack.  As if he had just come home, we watched in silence,  as he walked over, took his hat off his head, and placed it beside the others.  It was what we needed to let go.  We all wanted just one more hug.  But, Kathy came in to “take us on a tour.”   It was our cue.  We all walked down the hall together, turned the corner and walked out of sight; the door closing behind us.  We never looked back.  We couldn’t.  He was home.

Today’s the Day

In a few minutes everyone will be waking up.  Just wanted to write while there was still so much quiet.  The sun is bright and shining, once again.  A new day is upon us as if to say it’s a new beginning. All my children are here.  The girls came in last night.  Mark and I had been trying our best to engage with Jerry, but after hours of very little response, we were just barely hanging on and anxious for some new energy to come into the room.  Just in the nick of time, Amanda and Katie arrived refreshed and happy for the reunion.  It was the first time it has been just the five of us in years.  I took Jerry to bed after a few minutes, then we finished the night with some beautiful bonding. I listened while they laughed over childhood memories.  It warmed my heart.

Today is check in day.  I am praying that God is steps in front of us the entire way.  A couple of our dear friends have already moved in Jerry’s things and put his clothes in the drawers.  What a act of love!  All that is left is to move in the bed, make it up nice and pretty, and hang some pictures.  Mark, Robert and I will be doing that while the girls keep Jerry occupied.  Then we’ll all meet up at Homeplace.

Tears will flow, I’m sure, but the tears have already been flowing over the years.  The decline has been obvious, but we’ve all been trying to hang on as long as we could.  The time is right.  The time is now.    I confident of this very thing, that God’s protection and supernatural peace will be over Jerry during this transition.  He has promised us that we will leave us or forsake us.  There is peace in knowing that.

Plugging Along

My sweet readers, I want to thank you for all your comments and encouraging words.  Right after I wrote the last blog, the weeping stopped.  Since then, my son and I have been busy preparing for the move.  I spent hours filling out paperwork for Homeplace and VA.   Mark, our son, began to choosing photos and making lists.  So much to do..... Today, Robert came to take Jerry to the movie so we could get things together without Jerry seeing.  We had a 3:30 deadline.  It  has been a day where we both felt  rather anesthetized.  We’ve been going through Jerry’s clothes;  one stack to go with him, one stack to go to the Goodwill, and one stack to go in the trash.  It was mind boggling that we were doing this.  As we rummaged through the clothes, there were sentimental memories.   My hardest to see were his dress clothes.  He always looked so handsome. Mark always liked to take Jerry shopping and dress him all “cool”, so those outfits he kept for himself.....and his hat....I wanted Mark to have his hat.  All the clothing needed to be labeled, packed and  taken downstairs.  One of the JV’s came to pick up all the things that needed to go to Homeplace.  Along with the clothes were a table, lamp, and bedding.  I decided to send the painting of Montana and the painting of us dancing on the deck.

The girls are coming in tomorrow night.  We’re we’re still trying to come up with the perfect drop off plan. There is no easy way, but we’re trying to find the least sobby painful way.

I received a couple  great tips today from a friend who’s already been there.

1.  Write a note, “Jerry’s Gems” that explains who Jerry is, what he likes, etc. Print, in large print, easy tips  that will give the staff a clue of how to work with him.

2.  Keep things simple in the room.  Not much clutter on the desktops or tables.

Just wanted to keep you posted and thank you again for your thoughts and prayers.  Two days to go ’til check in.

“You Will"

When I first met nurse Gerry about two weeks ago, we talked about how to proceed.  He reassured me that Jerry would be fine.  Then, he cautioned me how I would have incredible feelings of guilt and sadness.  I remember distinctly how I told him I was ready and that I didn’t think I would cry.  He responded, “You will.” Well, yesterday, I took Jerry over for the hymn singing.  We walked into the activity center which was filling up with volunteers and residents.  There were two seats available on the front row next to the piano.  Jerry and I walked over to those seats and he sat down.  Ivan sat down in the other one.  Whew!  I excused myself to go fill out papers and view the room again.

Kathy, the director, and Gerry, the nurse, walked back with me to the room.  I felt this feeling of nausea in the pit of my stomach as we approached.  It was the same feeling that I had when we were first given the diagnosis eleven years ago:  a feeling of helplessness, no escape, and no turning back.  As I tried to straighten up,  I could feel myself  getting more and more quiet.  We walked in and they showed me more details, like;  where we would put his towels and how we could put his linens up on the shelf in the closet and where we could hang his hat rack.   I asked if I should bring a TV and if I could hang his clock and if he could have a stash of his favorites:  Planter’s peanuts, bite sized Snicker bars and packages of Oreos. Kathy said she would go out and buy new valances for the windows and asked what colors I would be using.  She asked, “How about blue and white striped ticking?  That might look good for Jerry.”  All of a sudden, it was getting personal.  No longer was that room just a room.  It was Jerry’s room.  I walked over to the closet door and ran my hand along the face of it.  Nurse Gerry was standing across from me.  I asked, “Should I put his picture here  so he knows this is his?”  My eyes skipped all around the room with no place to land.  Then,  I saw Gerry looking at me.  We both knew.  He said, “You are 'going there'.”

That did it!  “You didn’t have to say that.”  Then, I proceeded to water up like a bulging faucet about to burst.  I couldn’t stop.  “I can’t do this.”  I thought.  "I just can’t.”  We walked out to the nurses station and Gerry introduced me to another staff member and a new male CNA they just hired.  I asked them if they would watch Alabama basketball and football with him.  Whit, the new CNA said, “Roll Tide” as he passed on by.  I made them promise to be nice to Jerry.  (I was on about my third box of Kleenex by now.) Another nurse came around a gave me a hug.  I really felt the LUV from her.

So, miss strong and smug, “I won’t cry”, me......was told “You will”......and I did.  There will probably be five of us on Friday.

I Received A Gift Today

No, it wasn’t a chair or a bed. After Jerry and I walked the beach, we came in and he napped.  I went down to paint.  After an hour or so, he came to find me.  We hugged and I sat him down to listen to music while I continued to paint.  I put on his favorite “White’s” old timey music, then painted while he watched.  After a few solemn moments, he asked, “Where are you from?”  I was taken back a little, but then answered, “I was born in Alabama.”  After another few minutes, I asked, “Do you know who I am?”  He didn’t answer.  Then, I gently asked him again.  No answer.  I gave him a hug, then I said, “You don’t know who I am, do you?”  He hung his head and said, “No.”

I guess that’s when I realized.....he doesn’t know me.  I’m another one of those “women” who come to see him.  So, like sort of an out of body experience, I said, “That’s ok.  Just as long as you are loved.”  He said, “Yeah.”

Now, some people might wonder why I consider this a gift.  It is a wonderful gift.  It means, when we say goodbye next week, it will be like saying goodbye to “one of those women”.   That makes me feel relieved.  That means he’ll latch onto someone else when he gets adjusted to his new home.

What a gift.

Seven Inches of Snow

If I had any doubt about being able to do this much longer, it was erased yesterday.  With people coming at all hours every day to “play” with Jerry, the days have been totally manageable.  Just to have the interaction from others brightens his day and gives us a little break from each other.  I mean...face it....even healthy couples need a break from each other now and then.  Anyway, today will be the second day of being housebound with no company.  Yikes! It was exciting yesterday morning, because the snow was beginning to fall, but the JV’s (Jerry volunteers) had called to meet us at the furniture store.  They wanted Jerry to try out his new chair.  There were two stores.  The chair at the first store was way too small.  We thought it would work, but "too tall" Jerry made the chair look like a matchbox chair.  So we checked that one off the list and headed to the next store.  When we arrived, there were two beautiful couples waiting to give Jerry a hug and usher him to the first chair to try.  His bright toothy grin lit up the room when he sat  as everyone sat around to watch.  That one was really nice.  They had several chairs for him to try out, so we all marched on over to the second chair.  Now, this one was the winner.  Jerry sat in this beautiful maroon leather chair and it wrapped itself around him as if to say....."I’m yours.”  There was no doubt...unless we wanted to be all stupid and worry about what color leather we wanted.  DUH!  Such trivial details.  Anyway, when asked if he liked this one better than the last one...he had no recollection of the last one.  This one was it!

Funny.  Once the decision was made, we were excused.

When we left the building the snow was coming down hard, so we quickly went to the grocery store, then headed home.  As the day dragged on, I ran out of things to entertain Jerry with.  We watched a movie on netflix TV, then I tried to occupy him with a basketball game.  There was no sitting down for him.  Thank heavens the blizzard out the window kept him entertained.  He kept looking out and saying, “Do you see that?”  After the 42nd “Do you see that?”  We folded laundry and  I made another attempt at TV.  Nope.  I begged, “Please.  Let’s just sit down and enjoy a movie.”  Poor thing, just couldn’t even see the TV.  He would just sit and stare at ME.

Once 9:00 came, I couldn’t wait to crawl into bed.  Sleep would be good.

Today will be another snow day, however, the sun is shining bright and a walk on the beach seems in order.  We’ll wrap baggies around our feet and slip our shoes on. (Hmmm. I wonder if I’ve got baggies big enough.  We’ll try the gallon size.)   (Remember doing that as a kid?)  It is gorgeous outside.   Remember that song.....”How can you mend, a broken heart?  How can you stop the rain from pouring down? How can you stop...the sun from shining?  What makes the world go-0 ‘round?

I’d better get outside...quick!

A Wonderful Life

Last night our dearest, dearest friend, Bruce, took us out to dinner.  Bruce is the golf buddy/angel who has volunteered his time every Monday afternoon for the last three years.  He says it’s not a sacrifice, but that he and Jerry have a special bond...a special connection and friendship.  Bruce, somehow, manages to communicate with Jerry like no one else can.  They are true buds, accept when he “forces” Jerry to walk the trail in the beautiful national park around the corner.  Jerry always goes, begrudgingly, and leads the way. Bruce doesn’t know the entire story, because he refuses to be slave to a computer and doesn’t read the blog.  Since I don’t  have much private time to talk on the phone, he hasn’t exactly been able to hear the whole story.  But Bruce knows and has seen Jerry’s decline. Our time with Bruce was the first of the “goodbyes”.  When he rang the doorbell, there he was, standing there with his compassionate eyes and gentle smile.  Jerry was delighted to see him, in fact, covered his face with his hands to hide his huge surprised  grin.  Our favorite Italian place was too crowded so we opted for Chinese.  The place was quiet and the cutest little girl, Ting Ting,  waited on us.  Ting Ting had just  come from China to live with her aunt and uncle and learn English.  She had an infectious cheery spirit about her, which we all needed.

So, as we were eating, Bruce asked, “Is it set in stone?”  Down the drain I went.  I quickly responded, “Yes.  I have to.   Otherwise, I’ll never be able to do it. ”  He looked down.  Jerry was eating his spicy shrimp and minding his own business.  Bruce said, “I understand.  I see what’s happening.”  We both absolutely hate it.

Up until now, I’ve been able to stay positive and focused.  But the reality is setting in.  Nine more days until “move in”.   Jerry has no idea what’s about to happen.  It’s so permanent.   Earlier yesterday, I asked if he remembered that he was going somewhere to get more help.  I asked if he would like to pick out some pictures for his room.  We sat and thumbed through our album.  This was a test for me to see how much he was comprehending.  As we looked, he didn’t recognize anyone completely, not even his children.  What he did recognize, however,  were the good feelings that he had.  He was all smiles.  What he remembered was a wonderful life.

In a way, that helped me...the fact that he would not miss us.  Yet, after our sweet evening with Bruce, the reality came that we are getting closer to  closing the door to this chapter in our lives.  Boo! Hoo!   So, “get a grip, Sue!”  If all we have left in life is the memory of a wonderful life....I would say that’s a good thing.

Two acts of "I Love You"

Ok guys....this killed me.  Remember the footsteps I heard this morning?  I finished the blog and went up the stairs.  There came Jerry, straight towards me, arms held out saying, “I love you.”  I thought I would die.  I wrapped my arms around him, told him, “I love you, too.”  then thanked him for saying that.  I haven’t heard those words in ages upon ages.  Burying my head in his chest, my eyes started watering, but I didn’t want him to see.  Then, he proceeded to try to pick me up.  WHOA!  (He would have needed a crane!) I hugged him once again, but realized he wasn’t consumed with emotion like I was, so I excused myself to go upstairs and get my cell phone charger.  Once upstairs, I balled like a baby, collected myself, then went back down again. SO MUCH FOR MY BIG TALKING "MOVING ON" SPEECH.

Once again, I received confirmation.  This is just TOO MUCH.  About an hour later, my phone rang.  Now, earlier this morning, while gathering some linens and things, I looked upward and  said a little “thank you” for providing that chair.  Then, I sheepishly whispered, “Do you think you could provide a bed?”  Last night I had been surfing the internet looking for sales on double beds.  Man, they are expensive!  Ok...ring, ring, the phone rang.  It was my neighbor across the street.  She had read the blog yesterday.  She said, “You know, this morning I came down stairs and saw this double bed in our downstairs bedroom.  We never use that bed.  It was as if God said, 'That bed is Jerry’s.’ You have to take it”.  I nearly fell out!  She offered, not only the bed, but the headboard and linens.  I just can’t get over it.

It’s as if, so much good is happening, that I can’t even process it all.  I just keep moving forward, step by step, and things happen.

February 1

My dearest son is coming out from California on Monday to spend his last one-one week with Jerry.  It will be a bitter sweet week.  I am praying for God’s presence to be evident through precious memories, resolution, and peace. The girls will be coming down over the weekend and we will all participate in moving Jerry’s things to his new home. Homeplace has a weekly gospel sing and short devotion every Monday at 1:30.  I know, beyond the shadow of a doubt, that Jerry will enjoy that.  He loves the old hymns.  They bring warm fuzzies to his heart. With IVAN singing at the top of his lungs, it won’t be sad....it will be happy!  What a gift!  I’m going to take Jerry  to the sing this Monday.  On January 31, I’m going to take him again along with my kids.  We’ll be there as a family and I am praying that the sadness will be replaced with joy.  If possible, I’d like to leave Jerry there at that time.  I know he will be feeling happy.  BUT, I’M OPEN IF GOD HAS OTHER PLANS because He knows best.  After all, he’s made it pretty obvious that he’s got it all mapped out.

A dear friend from the North Carolina Alzheimer Association asked if I was going to continue this blog after this part of the Alzheimer journey.  The thought has been rumbling around in my mind.  It might be a little anti-climatic, don’t you think?  Perhaps, I’ll keep writing a couple of days a week, just to talk about Jerry’s adjustment.  Those who are contemplating these steps which may be ahead in their journey, may want to know how it all pans out.  However, we do need to move on and not get too comfy in the grief.

My children have expressed that this is so final and it feels like a death.  That grieves my heart, because I lost my own father when I was 29.  I know the loss.  I lost my mother when I was 37.  I know the loss.  This will not be easy for them, however, they know it has to happen.  My job is to continue living, not only for myself, but for my children and grandchildren.  Jerry would want that.  My job is to show my children that, with God’s help, WE can do this.  Yes, there will be times of shock, loneliness... an empty house feeling.   Yes, there will be times of guilt.  But, now is the time to be steadfast and look forward.  I am confident that Jerry will be in good hands and well cared for...probably better than I cared for him.  Instead of “staying in my grief”,  I’ve begun to make plans for the future.  I’ve enrolled in an intensive three day portrait workshop conducted by this fabulous artist.  It  begins on February 10th.  (Let’s just hope I can pick up a brush at that point.)  Friends will be spending the night at my house...so there won’t be much room for crying.  (maybe just a little bit.)

Moving right along.  I hear footsteps coming....

Even Down to the Details

Yesterday started out so good, with Charlene and Robert arriving at the same time.  The four of us had a grand ole time playing with Jerry.  Then, that wonderful Montana dog, couldn’t wait to take her walk. Every time we have such a good day, it makes me think...."maybe not now"....”maybe I can last a little longer.”  But, then I am reminded that the reason he is doing so well, is that he is surrounded by helpers who are completely focused on him.  Once I left the house, I needed to run by the bank to have some papers notarized.  While I was waiting for the bank manager I sat in the lobby. Now, I’ve been in and out of this bank a million times and have never had a conversation with anyone in the lobby.   Shortly after I sitting down, a woman about my age sat across from me.  We struck up a casual conversation.  She was from New York and was telling me how much she loved it here.  Before long, we realized we were practically neighbors.  THEN IT HAPPENED.  She said, “My husband is in a nursing home.”  Shocked, beyond belief, I said, “You’ve got to be kidding!  I’m about to place my husband in a memory care unit in New Bern.  What’s wrong with your husband?”  She told me that he has dementia and she placed him last April.  IN NEW BERN.  I nearly fell out.  GOD YOU ARE AMAZING.  WHY NOW?  WHAT PERFECT TIMING?

I now have a woman who has walked before me, my age, living right down the road.  As I was called into the office, I said, “We’ve got to get together.  Give me your name and email address.”  THEN....ARE YOU READY?  She handed me her business card.  SHE’S AN ARTIST!  I’m still shaking my head  in shock.

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After the day out, I came home to a happy Jerry who was glad to see me.  We ate and sat together to watch TV.  Believe it or not, Jerry kept repeating, “That woman and the old man.  That’s good.”  I knew he was talking about the sing along.  It just another confirmation.  With dementia people, even though they don’t remember, necessarily, events or details, they DO remember the feelings (whether positive or negative).  So there you have it, he remembered those good feelings he had at the birthday party.

HERE IS THE GRAND FINALE OF THE DAY.  I had put out an FYI to people I knew looking to see if anyone had a comfy chair or double bed that they wanted to get rid of.  These are some of Jerry’s needs for his new home.  Our beds at home are too big for the room.  He’s always wanted one of those swiffle rocker thingies and I was always such a snob about them.  I always made sure we had comfy chairs, but they weren’t the kind he grew up with.  I had checked some of the thrift stores and they were pretty shabby. So, I thought I’d just put out the word before having to spend that extra money.   Then the saints called.  Our precious friends from our church, who have grown close to Jerry  said they’d like to buy him his new chair.    What kind of love is this?

Mmmmm.  Mmmmmm.  What a day.

Thumbs Up

As we approached Homeplace today, I could tell Jerry was wondering why we were there.  I reminded him of our conversation last night and he remembered.  We walked in and the activity room was all decorated for a birthday party, but no one was there.   Kathy, the director, came to greet us and sat with us in the living room by the fireplace.  Kathy, with her glowing smile, kept Jerry from turning grumpy.  In a few minutes, the activity room was beginning to fill with elderly women.  I was holding my breath.  Then, Ivan came and with his loud, energetic voice, introduced himself to Jerry.  Jerry was seated in between Ivan and another quiet gentleman while I decided to be a helper and pass out cupcakes. A fabulous pianist came and started tearing up the keyboard, then Ivan burst into song.  He knew every word to every song, then said to Jerry, “Do you know how old I am?”  “I’m 100 years old and loving it!”  Who could NOT be happy around Ivan.  The entire room of people sang to  all the oldies.  Jerry, still looking like a deer in headlights, kept his skeptical eyes on me, yet, I could see he was enjoying it;  even clapping.  In fact, after Yankee Doodle Dandy, Jerry shook his fist as if saying, “HERE! HERE!”  He had two scoops of chocolate ice cream and made every attempt to sing along.  That was a good sign.

After the party, nurse Gerry, asked Jerry if he would take a walk with him.  I stayed and helped clean up while the two of them walked back to the memory unit.  My fingers were crossed, thinking, “Oh no.  This will completely freak him out!”  However, in a few minutes, I saw them  walking back down the hall and my Jerry was talking away.  As we left, Gerry asked Jerry, “Will you come back and see me?”  My Jerry, said, “Yeah.”

So there ya have it.  It was a thumbs up.

Now, I know it’s going to be an adjustment when my kids see the other residents.  Jerry is definitely the youngest person there by 15-20 years.  But, where ever I have looked the residents have been much older.  Even with that fact, Jerry actually is in a much more declined mental state than many of the residents.    I honestly think he will adjust and be happily unaware of the age difference in time.

Just as an aside.....the roommate situation.  Remember how I pray for Ivan for a roommate?  Well, I’ve been told that could be arranged.  How ‘bout that?  For now, however, I think we are going to take a companion room and wait to see what who comes in.  Ivan is right across the hall.  I’ve been told there are two others on the waiting list who are high functioning, so that actually might work better.  If not, they will do a musical chair act with the rooms.  It’s a win-win.

Thanks for sticking with us.

Brrrrrrrrrrenda

Today, we had our first CNA come to help Jerry take a shower.  Really, I was hesitant to do this because I didn’t want to embarrass him; plus I knew I could do it just as well.  But, all of my supporters told me, “No.  Take all the help you can get.”  So, Brrrrrrrrrrrrenda came.  I say Brrrrrrrenda with a rolled “rrrrrrrr” because she grew up in Scottland and had a very heavy accent.  What a character! When Brrrrrrenda came in, she sat down on the sofa and noticed my Bible on the table beside her, “I see yuff got the Good Book, heere.”  “Yes.”  I said.  “You recognized it.”  She proceeded to launch into the most wonderful testimony.  I was mesmerized by her heavy Scottish brogue as she told about the peace that passeth all understanding.  She said, "That’s Gaud’s peace.  Ye see, without ta test, we have no testimony.  My husband went to beee with the Lord thrrree yers ago.  Our everrry step is orrrrdered by Gaud.  ‘Fer the futsteps of the rrrighteous are orrrrrderdt by Gaud.’  We are His Worrrd and must have faith because Gaud loves us and wud never cause us harm.”

Just to think, I almost didn’t have Brenda come.  What a bright spot in our morning, and more confirmation that God is directing our journey.

So, “the man of the hour” right now getting scrrrrubbed and buffed.  Off to the birthday party today.  I’ll let you know how it goes.

Received a Message Yesterday

It read:  "Sue, I just was informed that we will have a male shared room available possibly by the end of this week.” Saturday will be our 39th anniversary.  I knew, in the back of mind,  if would be our anniversary. Lord Jesus,

I am not ready.  I don’t know how to pray.  I don’t know what to say.  Show me if this is truly from you and not caused by my weakness or selfishness.  Can I still continue at home?  I am asking for a miracle.  Give him Ivan as a roommate. Speak to me.  Lord, let me know if you are there.

Lord, let me be gentle.  Protect Jerry from being hurt.  Show me what to do.  Prepare his heart and his mind.  Guide me with a peaceful countenance.  Lead the way into this next phase.  Help him to feel warmth and love in his new home........

***********************

After the shock, I went downstairs and began going through insurance benefits and looking for financial resources.  For some reason, that moved me in a positive direction and kept me focused while Jerry was out with Bruce.  I called my kids and got their input, then sent a few friends a prayer request.  After thinking about it, I decided to be completely honest with Jerry about the whole thing.  We’ve had nothing but honesty between us our entire marriage and I just didn’t feel right about being manipulative.  So I called Kathy at Homeplace and discovered that there was a birthday celebration going on on Tuesday.  That would be a nice little introduction for Jerry.

Here’s the way it went.  Once we got into bed, I sat up and said, “Jerry, I’ve got to talk to you about something.”  He looked at me with those giant “what did I do?” eyes.  I said, “You know, we’ve always been honest, right?”  He said, “I guess.” I continued, “Well, we’ve had a lot of people coming in to help you lately.  Everyday.  I’ve been talking to the doctor and we all think that you need even more help.  We want what’s best for you and for you to be safe.  Do you understand?”  Jerry, “I guess so.”  “Well, do you know how much I love you and want what’s best for you?”  “Yes.”  “Well, I’ve been looking for places where you can get help around the clock for a while.  I need you to be brave and to cooperate.” He began asking how I found it and when did I do this.  I said, “I’ve been looking for a long time and I think I’ve found a place where you would be happy.  You’ll be surrounded by  people all the time.”   (boy, I was sweating bullets by now, but so far so good.)  Then, I looked over and noticed a little laugh and a smile.  Relieved, I said, “Guess what?  The head nurse’s name is Jerry.”  “Jerry!” he loves his name.  “And their church services are from Calvary Baptist Church, just like where you grew up.   I’d like to take you there to look at the place.  They’ve got a big birthday party tomorrow.”   He agreed, then his face became relaxed.  After about a minute, he softly said, “It’s the right thing.”

So, after all the angst, I thank you all for your prayers.    Jerry demonstrated the best of himself last night.

Home Health Services

The occupational, physical therapists, and cna people  are the best!  I’ve never met such a wonderful and caring group of people.  These services would have been available a year ago, however, I never tapped into it.  Sometimes, being a caregiver becomes so overwhelming that there is just too much to juggle.  We’ve had private companions coming in a couple of days for several years, but not OT or PT.  Honestly, there is not much they can do for Jerry accept go for walks, but they are a wealth of information; most of which I’ve already tried, but not all.  Today, the OT evaluation supervisor came.  She used a simplified checklist of the seven stages called FAST (Functional Assessment Staging Test). Jerry is at stage 7a-b.  Ability to speak limited to about half a dozen words.  Just before 7c-f, which is non ambulatory, unable to sit up, smile or hold head up. We explored different resources and she is sending out a social worker, just so we can leave “no stone unturned.

Here are a few little practical daily tidbits she offered.

NEON.  For some reason the visual/spacial impairment causes the dementia patient not to be able to see properly.  They’ve suggested signs in neon with a drawing of a toilet.  Or an old picture of the person framed in neon green to distinguish his bedroom.

TOILET SEAT.  Leave the toilet seat UP, because they cannot distinguish whether it is open or closed.  (sheeze...after all those years of nagging to put  the lid down!)

HAIRDRYER.  Since dementia patients are always cold, sometimes they get up too soon off the toilet seat. (not a good thing!)  It’s suggested to use a hairdryer to warm the seat before they sit down.  Hey!  What about a new invention!  Heated toilet seats!

RED RIBBON.  Use as a barrier to forbidden places..such as my kitchen.  (great use for that old wrinkled christmas ribbon.)  Eventually, he will see the ribbon and just turn around.  Yeah, we’ll see about that.  Yesterday, he pitched an absolute temper tantrum because I wouldn’t let him in, even though I had a seat for him at the counter.  The ribbon is going up today.

ALARM.  Get a stick-on alarm for the doors, so I know when he goes in and out.  Keep bedroom door closed at night so he won’t go out while I’m sleeping.  Keep shower and closet doors closed so he won’t go in there searching for  a bathroom.

You can find  tidbits  in the book “MY PAST IS NOW MY FUTURE”,  a practical guide to possible dementia care,  by Lanny D. Butler MS,OTR.   There is also a website: www.iatbdementiacare.com.  I’m ordering the book now.