Dreamin'

I have been having crazy dreams.  Meaningful, but, still crazy.  I am going to chalk it up to the stress I've been under.

On Thursday night, I had a dream about husband.  In this dream, there were people sitting at a bunch of tables.  It may have been a party, I can't remember.  Then, husband and I entered this party and all heads were turned towards us.  I heard gasps and watched as the people in my dream became envious of us, a couple in love, devoted to one another.

We were younger in this dream and husband was full of life.  He stood tall, smiling the smile that captured my heart so many years ago.  He looked down at me, eyes shining, looking so proud.  I looked up at him and said, "Look, they are all so jealous."  He laughed.  That laugh I haven't heard in so long.  I never felt so at peace as I did in this dream.

When I woke up, it was still dark.  I savored this dream, knowing it was a dream, but, wanted to keep it fresh in my mind.  Oh, it was such a nice dream.  I stretched, moved a little, then, turned towards husband. 

I forgot.  He's no longer beside me.  He is in a hospital bed, I have my own bed now.  And, there, in the darkness of my bedroom, with a soft glow of the night light from our bathroom coming through, was my husband.  The one in my dream who stood so tall, who walked so proud, who smiled so beautifully.

Sound asleep, jerking here and there, coughing, breathing heavily and his mouth wide open.

Talk about a reality check.

Ah, such is life.

Cry me a River

OK, so today is a new day.  I have been awake since 4 AM. 

Yesterday was filled with calling apartments, emailing apartments, looking online at apartments.  By around 2 PM, I was spent.  And, done.  I needed to take a break.  So, what did I do?  I went to Costco!  A little retail therapy for me!  Oh wait, scratch that.  I needed toilet paper and paper towels.

Wandering through Costco, enjoying "me" time, I went to the bedding.  I have no queen sheets for my new bed.  I've been using my old king sheets, which, fit OK, just need to do some tucking in.  But, they work.

I found some really nice sheets.  All in different colors.  I picked up one package, held in it my hands, read the label where it said "500 Thread Count",  imagined them on my new bed and the feel of it.  Reality hit me when I looked up at the price.  Put them back, (not so gently) and made my way to the register.

Tish went yesterday and found 3 nice apartments up there.  They won't know if there will be an opening for August until Monday.  However, one of those apartments called my house while I was at Costco.  I will call them today.  I'm just so over all of this.

I'm tired.  I gave it to God.  Gonna let Him take over.  No more.

Husband always forgets that he cannot walk anymore.  He will actually push his walker out of the way when he gets up from the bed.  He has taken falls, but, last night was one of the worst falls to date.

I brought him his dinner in his bed.  Not paying attention when he was finished, (I was watching Judge Judy), I hadn't noticed he had come out of the bedroom carrying his plate, without his walker.

Suddenly, I heard a thud and crash.  He had fallen right at the kitchen threshold, the plate smashing into a million pieces with him on top of the broken plate. 

I ran up to him, trying to pick him up.  He was moaning.  Then, blood started to appear on the kitchen floor.  Panicked, I thought of calling 911, but, looked more closely and found the cuts were not that deep.

As I was trying to get him up, it all hit me.  This stupid disease, his dying, losing his eyesight,  not knowing who I am sometimes, missing my Jack, Colorado, the cruelty of it all.

And so, on this hot evening, with Judge Judy still talking on the TV, my husband lay on the kitchen floor, bleeding, I sat down on the broken glass with him and cried.

I cried for everything.  For him, me, the kids, Colorado, the wonderful sheets I found at Costco, but, couldn't afford to buy, I cried for all that has been lost, I cried looking at husband's head, realizing I gave him a crappy haircut a few weeks ago, I cried because it was so hot outside, I cried because we can no longer share the same bed, I cried because I could.

Then, on this hot evening, Judge Judy still in the background, my husband lifted his head, looked me straight in the eye and said, "Oh, it's OK, please don't cry.  Everything will be OK."

I cried again, harder this time.

I cried because he knew who I was, he was OK after all and he's right.

Everything will be OK. 

  

Prayer Request

I guess I've gotten used to these hallucinations.  They seem to come on a regular basis now.  It used to throw me for a loop.  Now?  I just ride with them.  No big deal.  When they come, I switch gears and ride it out, waiting for the next one to hit.  Whatever. 

Could it be that the All Mighty and Powerful God has made me so strong that I can handle anything now?  I think so. 

Since placing him in his hospital bed, he sleeps all night with no getting up and wandering the apartment.  The labored breathing comes and goes.  Some nights it's disturbing, other nights, not so bad. 

The other night, as I lay there listening to him, I finally realized what it is.  Have you ever heard of the Death Rattle?  I read it somewhere, a long time ago.  Well, husband has reached that point.  When I hear it, it haunts me.  And, scares me a little bit.  Because I know what it is now.  Not so comforting when you are trying to go to sleep.

Tish checked out our apartment up there in Colorado Springs yesterday.  Afterwards, she called me and told me that she got a bad feeling when visiting the grounds.  She advised me that the place was run down, dirty, screens hanging from sliding doors and windows and  said she would not feel right if I took the apartment.  I am trusting her and Jace's judgement.  She said, "Mom, there is no way I can have you live there.  You would not like it if you saw it.  Jace and I both agree that there is something better out there."

So, after having a fun filled day of hallucinations, here I am, 6 weeks out, having given my notice here and no place to go up in Colorado Springs.  Tish and Jace will look again today up there, but, I am completely broken down this morning.

Where will we live now?  If I stay here, they are raising my rent $250 per month, that is, if I don't sign a lease for at least 1 year.  How can I save to move then?  Also, I don't want to stay here.  My dislike for this city permeates my every breath.  I want out of here. 

So, my friends, if you are the "praying kind", please pray for me.  Pray for Tish &Jace, that they will be able to find us something up there. 

I just can't deal with all of this today.  It's just too much. 

Don't cry for me, Argentina!!

Ho, hum.  Another day in my life.

Husband has not been behaving lately.  He has been nasty and mean to me.  He gets this way.  To bring him out of his nasty mood last night, I started calling him "pumpkin butt."  He seemed to like that.  I told him every time he starts to act up, I will call him "pumpkin butt."  He chuckled.

He has woken up early today.  And, is in a foul mood.  I am already dreading today.  He doesn't know if he went to the bathroom or not, so, he's back in there.  He scowled at me when I told him he just went.  Now, he's back out, looking around, trying to find the bedroom.

I am trying to change the way my day is going already and it's only 7:30 AM!!!

Husband started in last night talking about moving his hospital bed when we move.  It's easy to move, but he kept insisting that we hire movers to move it.  First off, I have no money to hire anyone, second, I know how to fold it up and wheel it to the truck.  He doesn't believe me and said I will probably break it if I do it myself. This went on for about 2 hours last night.  Exasperating!!!

I would rather put up with the memory and eyesight loss than this.  It's so hard on me when he gets this way.  There is no avoiding it.  It's like a train wreck going to happen and all I can do is stand in front of it and let it hit me.

Nothing brings him out of it.  You just have to let it ride itself out, hoping and praying it only lasts for a little while.  Oftentimes, it will only last for a little while.  Other times,  it can last up to 2 days.  It's fun, I'll tell ya.

Yesterday was my neighbor's birthday.  I had told him I was going to do something nice for him.  Of course, husband and Alzheimer's had other plans for me.  As I was apologizing yesterday morning, saying husband was in a bad way, he looked so sad, which made me feel awful.

Then, he looked at me and said, "Oh honey, don't worry about me.  I'll be fine.  Birthday's are not a big deal for me anymore.  You just take care of your husband."  Then, he started to cry and said, "I just feel so sorry for you and what you're going through.  It must be so hard.  You look so tired and my heart breaks for you."

I took his hand and said, "Oh dear, don't feel sorry for me.  I'll be fine."

Yes, I am tired.  Yes, I am sad.  Yes, it is hard on me.  But, he's my husband and God has given me this job to do.  I have to do it. I have to do them both proud.

Yes, I'll be fine.  It's just another storm I have to ride out.  I'll come through it like the one before this and the one before that.

Reminds me of that song, "Don't cry for me, Argentina."

Cry for what he's lost.  Cry for what we've lost.  Cry for what the kids are losing. 

Me?  I'll be fine.  Just you wait and see!! 

Hurry August!

Well, the kids are gone.  They left yesterday morning.  There's always a hole when they leave.  But, this time, not so bad.  We will follow them up to Colorado Springs in 6 weeks.

Husband was fine during their visit.  Well, as fine as he can be now.  He enjoyed their visit, I could tell, but, Tish was taken aback by his decline.  I warned them.  It's not so pretty here anymore.

After they had left, I was doing my laundry.  I handed the dog leash to him, as I had husband sitting outside.  Told him I was going to put the clothes in the dryer.  Came out of the laundry room, and, there, running through the parking lot, leash still attached to my him, was my dog, looking for me.

Got the dog, thinking the worst had happened to husband.  Ran up to our porch and there was husband, just sitting there, in a daze.  I asked husband if he was OK, he looked up at me with surprise, didn't know me and said nothing.  I took him and the dog inside and put husband to bed.  There, he slept for 3 hours.

Those kind of scares keeps me rattled for hours.  I kept thinking the worst of what could've happened.  Husband collapsing on the porch, my dog running out to the busy street possibly getting hit by a car. 

I recovered and made a mental note to not let husband be in charge of the dog anymore.

By evening, husband was beginning to hallucinate.  I tried to avoid it by talking to him, making him smile.  It was no use.  It went downhill from there.

I was worn out by 11 PM.  Put him in bed for the 4th or 5th time, (I lost count) and he finally, finally, fell asleep.  I braced myself for a rough night.  It never came.  He slept all night long.

I don't know how he'll be this morning.  You just never know.  It's his bath day and he loves his bath.  Just like a baby. 

As the kids were leaving, Jace leaned down to husband and said, "We'll see you in August.  It's going to be OK up there.  We'll have a good life."

Oh, hurry, August! 

Lost dog?

Well, Tish & Jace didn't make it here yesterday as planned.  Seems Jace's truck was over the weight limit, so, they had to dump some stuff.  He had some bricks he wanted to use as landscape in their new house in Colorado.  Got rid of them and had a late start.  Tish said they would try to make it in, but, were so tired, they decided to stop for the night near Hatch, New Mexico.  They will be here this morning.

We had an uneventful day yesterday.  Husband was in his own world, but, no hallucinations.  I took him outside in the afternoon where we sat for about 3 hours.  He enjoyed it.

I had planned a nice dinner for the kids.  I cooked it anyway and husband loved it.  He doesn't eat much anymore, but loved my roasted chicken.  I also made, for the first time, angel hair pasta with fresh pesto sauce.  It was delicious.  Going to do that more often.  Alongside of the chicken and pasta, I had organic baby peas.  Delish!  Tish said she can't wait to eat the leftovers.  She loves her mama's cooking!

Once I got husband settled in bed, I kept watching him as I sat out in the living room.  He did not go to sleep, he kept moving around.  When I went to bed, he was still awake.  I found out why he was fidgeting so much.  He had taken the remote for his bed and was pressing all the buttons on it.  It really was funny.  His legs were drawn way up and he was sitting up so much, I thought he might just topple out of bed.

I had a good laugh about that.  I lowered the legs, lowered his back so a slight incline.  Told him to stop playing with the buttons on his remote.  He pouted a bit, but, I squeezed his nose, making a joke about it.

Got in bed, all the while, praying he wouldn't have that awful breathing, and closed my eyes.  Just as I was dozing off, husband began to tell me that our dog was lost.  Oh no, I though, here we go again.

It took me about 15 minutes to get him calmed down and convinced that the dog was on my bed, safe and sound.

We both slept the entire night.  Yay.

Husband just woke up and is not in a good frame of mind.  Is lost and confused. 

And so, my day has begun.

August

Tish & Jace arrive today.  I am looking forward to them being here until Monday, where they have to  report to housing at Ft Carson in Colorado Springs.  We follow on the 10th of August.  I hope July goes as fast as June has.

Yesterday was an OK day.  Not too many hallucinations.  Husband would not nap.  It was a nice day weather wise, so, we sat outside a lot.  Father in law came up in the morning for a visit.  I showed him husband's new bed.  He was happy and relieved that I made the decision to place husband in a hospital bed.

Father in law saw first hand husband's hallucinations.  He looked at me and kind of smiled.  Yes, we have a bond now.  He understands where I am coming from when it comes to husband.  He told me I handle it very well.  He's been through it. 

I did not sleep very well last night.  I don't like the way husband's breathing has been for the last few days.  It's an awful sound.  He will moan, as if he is in pain, but, he's not. 

As I laid there listening to him, I started thinking of his brain and what it's doing, or, not doing.  I got kind of a rhythm going.  He would take a few deep breaths, but, fast, then, there was no breathing, then, a big gulp of air would follow.  He would then let out a long moan, breathe ok, then the rapid breaths would come, then, no breaths would come out and another moan.

I tried as hard as I could not to listen.  I don't like that sound.  It's the sound of a dying man.

I honestly hope none of you ever have to hear something like that.  It's so awful, that's the only word I can come up with at this time.  Actually, there are no words to describe that sound.

So, Tish & Jace come today.  God has given me something to look forward to.  Oh, how I will love the sound of little Alex as he wanders my house.  The two older kids as well.  Sitting and having a real conversation with someone.  Laughing.  Real, genuine laughter.

All too soon, they will be gone, already in Colorado.  But, August will arrive and I too will be bound for Colorado.

August, come quickly.

Grateful

When I woke up this morning, I quietly slipped out of my new bed.  Headed for the bathroom.  Husband sat up and said, "Don't go in the bathroom!"  Surprised, because I thought he was asleep, I did something I don't recommend doing with an Alzheimer's patient.

I asked, "Why?"

"There's a guard dog in the bathroom.  He's vicious."

And, a good morning to you as well.

Normal people wake up with their spouses with a pleasant "good morning", asking how they slept, do they feel alright or just with a good morning kiss.

Me?  I have "guard dogs" in my bathroom. (sigh)

Yesterday was busy with husband.  Hallucinations continued until early evening.  He was fine for a few hours, then, bam, here we go again.

Got him settled in his bed.  Twice.  By the third time around, I was getting tired.  He got out of bed, again, telling me he was looking for the straps.  Straps?  What straps?  Actually, I was hoping we did find the straps(?), so I could strap him in!

He tells me, "An old man just brought the straps in and put them right here, (patting his bed), now, I can't find them."

It took me awhile to convince him that no one brought any straps in.

I can see straight into our bedroom from the living room.  I would be sitting here, watching TV, when he would sit up, attempting to get out of bed.  I would snap my fingers, and say, "Nope.  Lie down.  It's nighttime, lay down."  In a not so nice manner.  He would oblige, muttering that I was being mean.  "You bet,"  I'd say, "now, go to sleep."

Oh, he's a handful, that husband of mine.

After he had gone to sleep, I sat outside and enjoyed the breeze and I got to thinking.

You know, I have to count my blessings here.  He could be in pain.  He's not.  When everything is being taken away from him, including, but, not limited to, his eyesight, he has no pain.

And, for that, I am grateful.

"What's Father's Day?"

Father's Day did not go so smoothly.  Husband began hallucinating in the afternoon and it has not let up.

He started packing some of his stuff, saying he wanted to go home.  Tried talking to him softly, reassuring him that we were home.  He was having none of it.

Took him outside on the porch after dinner.  He kept saying how beautiful our backyard was.  We don't have a backyard.

I asked him if he had a good Father's Day, kids called, especially Jack.  He said, "Jack?  Who's that?"

Told me he doesn't know why I keep asking him about Father's Day.  "What's Father's Day?"

He is still in his own world, but, seems calmer. 

He slept pretty good.  I didn't.  Kept checking on him.  His breathing is getting rough.  Labored even.  He now sleeps with his mouth wide open.

When I woke up this morning, I immediately looked over at husband.  There he was, hands folded across his chest, eyes wide open, staring into space.  Didn't even flinch when I stood over him.

Today will keep me on my toes, for sure.

I just know it's going to be one of those days.

I need to dig deep today. 

I don't want to do this.

Father's Day 2013

A little late post today.  Busy morning.  Husband soiled his bed in the night, so, instead of doing my laundry tomorrow, I decided to do it today.  Ugh,what was I thinking, it's hot today.  The last two loads are in the dryers now. 

Husband got breakfast in bed.  He is a little confused as to the day.  I keep telling him, Happy Father's Day, he smiles, politely, then looks away.

Kids have been calling.  Our Jack called from Germany.  I talked with him for a little bit, then took the phone to husband.  When I told him it was Jack, he had no memory of having a son named Jack.  I said it again, "Honey, it's Jack, your son."  Finally, a light bulb went off, he smiled and took the phone.  I had to show him how to hold the phone.  He has been looking at it like it is a foreign object.

Thank you, Michelle, on your sweet comment about showing my grief.  It's not like I want to hide, but, I just don't want to become one of those people who walk around boo hooing about what life has dealt them.  I never, ever, want to feel sorry for myself.  I don't want to become "one of those".

We have Handicap parking 4 apartments down from me.  Since we moved here, I got covered parking, paying $15 extra each month.  The lady that has been parking there has a handicap sign, but, is not handicapped.  She got it from her ex boyfriend, because it's right outside her apartment.

After what I heard Wednesday at the Dr's, I spoke with her Thursday and said, "I just want you to know that I will be taking over the handicap spot until I move".  I pointed to husband and said, "This is handicapped,"  pointed to her and said, "That is not."

We have always gotten along and I like her a lot.  She is the one who's husband left her after 35 years of marriage.  She hung her head and said, "You know, I've been meaning to talk to you about that.  I feel so selfish.  I feel so bad."

It all worked out perfect.  Went to the office and told them that we were changing parking spots, to not tow her truck. 

I told her I was nervous about taking over her spot, but, she was just so nice about it all.  I also told her that if she is ever caught using someone else's handicap sign, she could be in big trouble.  I think that scared her.  There is no charge for the handicap parking.  She loves my/her covered parking now!

Today, I am going to BBQ hamburgers.  Grilling corn on the cob too.  I made husband brownies.  Not too familiar with BBQ'ing, so, hopefully, we won't have charred burgers. 

Just another "new" to me.  Gotta learn it sometime.

Here's to wishing all the dads out there, (if there are any reading) a very Happy Father's Day.  May your Day be blessed with family.

Ours will be blessed too.  Just, in a different way.

Memories.

Googling Grief

Husband's hospital bed arrived on time, late yesterday.  It's nice, if you like hospital beds in your bedroom that is.  At least he's safe now.

I slept on his side of our bed last night.  To be closer to him, in his bed.  I had a hard time falling asleep.  I kept opening my eyes and looking at his bed.  I thought I was actually in a hospital.  It was a strange feeling.  It's bittersweet as well.

He's safe, I kept telling myself.  Forget what the bed looks like, I said.  But, reality tells me that this is the final step.  This is it!  In doing my homework on the subject of Alzheimer's 101, I did read somewhere that when "patient is in the final stages of Alzheimer's,  it may be necessary to place patient in a bed that will keep patient safe, like a hospital bed."

And so it goes.

On the bright side, my new bed arrives today!  Yay!!  I was going to sell our old bed, but, thought that might be greedy, on my part, so, a neighbor of mine was in need of a bed.  I am giving it to her.  She is so excited.  Makes me feel good to see someone smile.

My bed will be delivered between 2 and 5.  This will give us time to get the old bed out, making way for a brand new, smaller one.  I still want to vacuum the bedroom, re-arrange some stuff and general cleaning.  Busy day.  I am looking forward to tonight.  Sleeping on a brand new bed I now can  call my own.  Bittersweet!

I ran to Trader Joe's yesterday afternoon.  To get more of my coffee, for my espresso machine.  They have the best espresso coffee beans.  When I got up to the register, the clerk smiled at me, I put on my best smile back at him.  He asked me, "So, how are you doing today?"  Being the actress that I am, I smiled and said, "Oh, I'm doing good."  He looked at me and said, "No you're not.  Why do you look so sad?" 

And there, in Trader Joe's, on a busy Friday, I told him in a nutshell, what my life is like now.  He looked at me and said, very sincere, "I knew there was something about you that caught my eye.  Your eyes look so sad.  I am so sorry you are losing your husband.  God Bless, you ma'am."

As I was driving home, it bothered me to think that my life now reflects in my eyes.

Gotta Google, "How to get that grief out of your eyes," today.

Either that, or, learn to be a better actress!

Two beds

I love early mornings.  I love to make my espresso, go outside and sit on my porch.  My apartment complex is so pretty.  It's a park like setting.  The grass is so green.  There are trees everywhere.  Aspens, pine and cotton wood trees.  And, birds.  All kinds of different birds.  I have a hummingbird feeder hanging from my porch.  Love, love, love to watch them, especially in the mornings.  Boy, can those little hummingbirds be aggressive.  They fight for that homemade sugary food.

I went to the Library yesterday.  I felt like a little kid getting her first Library card!  I checked out 3 books.  I have read half of the first book.  As I sat here reading yesterday afternoon, husband was sleeping, all was quiet.  I began to imagine next year this time.  I imagined husband gone and here I am, alone, reading.  Didn't affect me one bit.  Didn't make me cry or feel sad or alone. 

He's gone anyways, so, it doesn't matter.

Husband's hospital bed will be delivered today.  I have told him all about it, that it will go up or down, that I can lower it, making it easy for him to get into, he doesn't have to struggle to sit up, and, best of all, I told him, he won't fall out of bed anymore.  Safe, I told him.  He can't grasp the concept of a hospital bed anymore.  He doesn't remember what they look like.  He said he has never heard of such a thing.  He doesn't believe me, that such a bed exists.

Oh, the wonders of Alzheimer's.

Hospice will begin next week. 

A family member told me to go pick out a new bed for me.  For me!!  My birthday is next weekend, she said it was a birthday gift.  She is always there for me.  I love her so very much.  And am so grateful to her.  I picked one out at a mattress store and when they told me the price, I almost fell down.  I came straight home and emailed family member giving them the price.  The next day, this past Tuesday, Fed Ex showed up at my door with a check for the bed. 

My brand new bed will be delivered tomorrow.

It will be strange not sleeping with husband.  He asked me if we could move the beds close and if he got scared, could I hold his hand?

Damn, I hate Alzheimer's.

I have decided to try and publish this blog when husband is gone.  It's a story that needs to get out there.  I will shut this blog down, but, create a whole new one.  One that involves just me.

One day, as you are browsing through the book section, be sure to look up 4th Pew on the Left.

Some of you asked how I do it.  I honestly don't know.  God knows.  I sometimes surprise myself at how I react to situations. 

Changes.  So many.  Sometimes, so sudden.  But, this is my life.  My story.  My journey. 

I am going to survive, I know that.  Maybe a little worse for the wear, but, survive I will.  I have to.  To honor husband.

He's counting on me.

Devastating

Where do I begin? 

Here I was, thinking all the way to the hospital yesterday, that I could handle anything.

To make a long story short, when Dr A was examining husband, he saw how far he has declined.  I told him about the eyesight.  Dr A, knowing I do my homework, asked me what I thought.  I told him I thought the part of the brain controlling the eyes have become involved now.  Dr A looked straight at me and said, "We shall see."  He was baffled at husband and this eyesight issue.

Dr A and I sat together and brought up the MRI.  First, he ruled out any strokes that might have occurred, affecting his eyes.  And then, we went to the back of the brain.  It was devastating.  Dr looked at me and said, "What do you see?"

Husband's brain, at the back, has pulled away from the skull.  It is shrinking.  There are canals, or gaps, if you will, throughout the brain, mostly centered at the back part.  Classic Alzheimer's scan of the brain.  Classic.

And that is where Dr A pointed out, the eyes are controlled.  Complete damage. 

Not only has husband lost the use of his legs, speech and memory, he will now, I am told, be blind.

When we were done, and I was trying not to cry, husband asked the Dr, "Am I going to die?"  Dr looked straight at him and said, "Yes, Mr Lucero, you will indeed die."  Straight and to the point, that's what I love about Dr A.

When the Dr had left the room for a minute, husband looked at me and said, "So, there's no hope for me?"  "No."  I said.

There is nothing left to say.  Dr said it could be 6 months or longer.  Told me to take him home and love him, making whatever time he has left comfortable.

And so, my friends, that is what I'll do.  Today is a new day.  I will put my Big Girl Pants on and when husband wakes up, I will go to him, kiss his forehead and say, "Good morning, honey".

Yes, indeed, Good Morning.

MRI Results

Would've posted yesterday, however, Mother Nature had other plans.  We had a major blackout Monday night.  No power, cable, internet or phone.  All has been restored except for my phone.  Let's hope that comes back today.  It was miserable here without power and air conditioning.  Can we say hot?  The duck pond was beginning to look good to me.  Oy.

I take husband in to the Dr for the MRI results this afternoon.  Also, the failing eyesight.  I am prepared for whatever. 

If I can, I will post this afternoon on the results.

Let's all pray that this journey is almost over for him.

And me.

Monday Agenda

I think we are on a plateau now.  Husband is the same every day.  Wants to go "home", has to be shown where the bathroom, bedroom and kitchen are.  I explain what a toilet is, what a front door does and how to work his TV. 

Hospital bed will be ordered today.  I got up this morning, he was in bed.  Went to the bathroom, came back in the bedroom and there he was, face down on the floor with his head wedged in between the nightstand and the bed.  OK, enough of this.

I tried explaining to him what this "new" bed will do.  He doesn't understand.  He thinks I am locking him in a bad bed.  Locking?  Well, sort of.  I've got to make sure he is secure.

There are times when I do fall asleep, I sleep so soundly from pure exhaustion, that I don't hear him.  Another reason for the hospital bed.  Imagine, I will go to bed at night like normal people do and possibly sleep?  Oh, just the thought makes me excited.

I am also going to call Hospice.  Medicare pays for it, so why not use it?

I had them come out about 2 years ago.  They said he was just not ready at that time.  I agreed.  Well, the time is right now.  She told me back then that in order to qualify he had to have had a terminal diagnosis (got that one), and not be able to feed, dress, bathe, go to the bathroom without assistance or walk.  Well, wonder of wonders.  We have met all the criteria now.  Let's hope they can come 2-3 times per week. 

It's times like these that make me uneasy.  I know he will slip away even further from me, just don't know when.  We could be on this plateau for a few days to even a few weeks.  Just when I get used to the situation, right out of left field comes a new onslaught.

I am more or less prepared.  Just gotten used to it.  This phase won't last, I know that from experience.  What comes next is always hard for me to adjust.  It throws me for a loop at times because I try to prepare myself, but, when it happens,  it's so sudden and devastating, that, I find it hard to catch my breath.

So, today on the agenda:  Call for Hospice and order a hospital bed.

How fun is that?

Good afternoon

Not much going on here.  I cleaned house yesterday while husband dozed in his scooter chair.

I was going to wait until we moved in August to put husband in a hospital bed, but, with recent falls out of bed in the middle of the night,  I have decided to put him in one this week.

I mentioned it to him yesterday.  He actually understood me, and said he did not need a hospital bed.  He's like that.  Will disagree, then, once he gets used to the idea, it's OK.

This will be a big step for him, like when he went to the wheelchair.  Or, putting him in diapers.  It's just one more adjustment.  But, oh, I will sleep better once he is safe and sound, in a bed that can contain him. 

He took a long nap in the afternoon.  With the house screaming clean, I sat outside.  One of my neighbors was at the duck pond wandering around.  She is a real crack up, but, nice as well.  She always puts a smile on my face.  She saw me sitting outside and came over. 

She was married for 35 years, raised 3 girls and is a grandma to 5.  1 1/2 years ago, her husband divorced her and moved to California.  Now, this lady was a stay at home mom, never worked a day in her life.  They owned their own home in the mountains.  Her life was turned upside down.  She couldn't stay in their home, couldn't afford the mortgage.  She had to find a job and a place to live quick.

Today, 1 1/2 years later, she works and has her own apartment.  She came out of it, a little worse for the wear, but, she managed to create a whole new life for herself.

We sat on my porch for about 2 hours.  Talking.  Laughing.  Crying.  Of course, she knows about husband and asked me, "With your husband dying, how can you sit here so calm, laughing and carrying on?  You are always so nice to everyone, saying good morning to people as they walk by?  I would be sitting in my apartment crying all day long."

I turned to her and said, "How can you sit here laughing when your husband walked out on you after 35 years of marriage?  Left you practically homeless and penniless?  Your whole life turned upside down?"

We both laughed at our similar situations.  Neither one of us had a choice or say in the matter.  We have been left with what we are left with.  But, both of us decided that life didn't end with a diagnosis or divorce.  While our lives are different now, it's still a life.   While we are the same, everything else has changed.

Yes, we have overcome a lot.  While we both agreed that we have some battle scars, we are still here and kicking.  We refuse to give in and let grief overtake us. 

My, it was a good afternoon.  Yes indeed.

It's not over til the fat lady sings

When I posted about me being so timid and not speaking up for myself yesterday, it got me thinking about how much I have changed.  Some may say I am too vocal now.  Some may say I might be a little on the negative side now.  Some may say I might be bitter. 

Too vocal now?  Let's go back a few years:

When I suspected husband of inheriting "the curse", I was shot down by so many.  Including family members.  Everyone said I didn't know what I was talking about.  They would not listen to me.  I walked around for 2 years thinking I was imagining this odd behavior.

In 2010, my fears were confirmed by 5, yes, you read it right, 5, Neurologists at UNM Hospital.  Maybe everyone just didn't want to face reality, but me. 

A little on the negative side?  Read above.

Bitter?  Ditto.

Now, I don't walk around with a chip on my shoulder.  I don't live in the past.  I try to live each day with a good vibe.  I try to give off good energy to those around me.  I don't walk around saying, "boo hoo, poor little ole' me".

However, I now stand up for myself.  If I disagree, I say it. 

Funny how life changes a person.  I often look back on my life and wonder how I got here.  There were so many other things I wanted to do.  We wanted to do.

But, God had other plans for me.

My days are now filled with the sights and sounds of Alzheimer's.  Changing diapers. On a grown man.  Bathing husband.  Wiping husband's face after eating.  Soothing husband when he wants to leave here and "go home".  Guiding him to the bathroom when he forgets where it is.  Talking him down when the hallucinations begin.  Trying to understand him when he talks.  Explaining what a toilet is.   Reassuring him that there are no people in the bathtub when he goes in there.  Telling him he is not on the roof and will fall, he is in fact, on the bed.   Picking his legs up, only to find that they are swollen again and cold.  Very cold.  Wiping drool from his mouth.  Handing him his toothbrush, urging him to hold it for himself.  Telling him what a fork is.  Convincing him that I am his wife,  I am right in front of him.  And then, the beloved questions.  All day, all night.

Yes, I have changed.  Alzheimer's has brought me to my knees.  Alzheimer's has changed me. 

A little too vocal?  Hmm, maybe.  A little too negative?  You got it.  A little too bitter?  Yep.

I've come a long way.  And, this journey isn't over yet. 

Not until the fat lady sings.

The Alzheimer's Alphabet

I go next Wednesday to view the results of husband's MRI.  At my insistence.  We originally had been scheduled to see Dr A on July 15th.  I told them that I would not or could not wait that long to get the results.  I want to see the MRI for myself.  I've been doing my homework.  I now know what looks good and what doesn't look good.  When all is said and done, and the monster has taken his last bow, I think I shall become a Neurologist.

Husband has been in a constant state of delusions and hallucinations the entire week.  Some are actually funny, some, not so funny.  Just to name a few:

Guided him in the bathroom.  He told me he couldn't go in there.  I asked him why.  He said there were too many people in the bathtub.

Said he couldn't go to sleep the other night.  I asked him why.  Told me I was driving too fast and the dog was lost.

On his way to the bathroom, he was holding onto the bed.  He kept asking me how he gets down.  I told him he was down.  He looked at me, chuckled and said, "No, I'm on the roof, you are so silly(?) I need you to tell me how to get off this roof."

Like I said.  Just to name a few.

Husband's eyesight has me baffled.  I truly believe the optical part of the brain has been damaged.  The monster is moving like wild fire through his brain now.  A nurse at Dr A's office did not agree with me.  She said he might be having mini strokes, causing the eyesight to fail.  She also said something so funny that when I got off the phone, I laughed and cried all at the same time.

When we were discussing the brain damage to the eyes vs mini strokes, she said, "Mrs Lucero,  we are talking about the health and welfare of your husband."  Not missing a beat, I said, "You know, I know you are new to the practice (she was, her first week), but, if you look at my husband's history, he is terminal, with probably months left to live.  What health and welfare are we talking about?"

There was a pause, then she said, "Oh, I see here that he has Alzheimer's?  I'm sorry, I didn't know."  Given it was her first week, I told her it was OK, just look closer before you start handing out advice to someone like me, who can recite the entire Alzheimer's Alphabet.

Within a matter of minutes, she scheduled us to come in next Wednesday. 

I used to be so timid.  I used to never speak up for myself.  Even if I disagreed with someone, I never spoke my true feelings.  Didn't want to upset anyone.  Always went along with whatever anyone said.  Never, ever, would I cross someone.

Until, that is, Alzheimer's came into my life.

Not only has Alzheimer's changed husband's life, forever, it's changed mine.

Forever.

Two faced

Oh, gotta love those hallucinations. 

I went to be at 10:00 PM.  It was all downhill from there.  Husband woke me up at 11 PM, 1 AM, 3 AM and 5 AM.

Sleep?  What sleep?  I have come to the conclusion that I'll sleep when I'm dead.  Actually, I have gotten used to feeling tired, it's just another perk of Alzheimer's.

It is scary and, I have to admit, rather amazing when the hallucinations come on.  Husband's face changes dramatically.

His jaw will jut out, his bottom lip will turn outward and his eyes will either be squeezed shut, or, (and I hate this part), eyes wide open, huge, with the look of a wild caged animal.  Yes, it's quite interesting. 

When the episode is over and he goes back into his own world, the face relaxes, his eyes return to what is now his "normal" look and he's fine.  Absolutely no memory of what just took place.  None.  Nada.  Zip. 

I'm taking all this in stride.  I read about it a few years back, the hallucinations.  I always hoped he wouldn't go through those.  It sounded so scary.  I often thought to myself that there would be no way I could go through that.  Well, wonder of wonders, here I am, going through it.  And, still standing. 

Instinct, if you will, takes over for me.  I remain calm, all the while talking to him, agreeing with him whatever it is he's going through.  If he misbehaves during one of these hallucinations, I get stern with him.  

Trust me, if any one of you ever get the opportunity(?) to witness this, your instincts will take over.  But, you have to be strong.  You can't fold with every aspect of Alzheimer's.  I never, ever, in a million years thought I could handle such a situation.  Here I am, handling it and getting through it, picking up where I left off.  Absolutely crazy.

I may be crazy one day.  After this?  When husband is gone, I want to feel as if I did my very best with him.  That's all I want.  I want him to know and understand just how much he means to me, that I'd do anything for him.  To the extent of holding his body close to mine when he is shuddering from hallucinations.  

I like to think that he does know.  Somewhere, deep inside his damaged, wracked brain, that he feels the love and devotion from me. 

Yes, I believe that.

Ready or not, here it comes

Last night, husband slept better.  He did, however, wake me up at 4 AM, telling me the sewer had backed up.  I flew out of bed, legs a little wobbly from being woke from a sound sleep.  Ran into the bathroom and found....nothing.  Clean as a whistle.  What?

First off, I don't think we are on a sewer system, second, he was hallucinating.  Love me some hallucinations.  At 4 AM.

At 6:30 this morning, I opened my eyes to find husband staring in my face.  If you've ever experienced that, you know what I mean.  His eyes were wild looking, big, round and very strange.  He said, "Hey, you, I have to go to the bathroom.  Can you show me where it is?"

Yep, I've become, "hey you". That started, I think, Thursday.

I looked up Alzheimer's brain vs normal brain yesterday.  There were many  views.  It wasn't a pretty sight.  Each time I looked at the damaged brain views, I wondered what his looks like now.  Going to call Dr A's office today, leave a message for Dr to call me back.  I am going to ask if I can come in and view his MRI from Saturday night.  Knowing Dr A, he'll probably say yes.  Call me morbid, call me whatever, but, I do want to see it.  Also, by the results of the MRI, Dr can tell me just how long husband has left.  Months?  By the way he is now, probably.

And so, ladies and gentlemen, the saga of our life continues.  I am feeling better, got some sleep, ready to face the day. 

Rather, ready or not, the day has begun. 

No mercy

Rough night.  I had to take husband in for his MRI last night.  At 10:45 PM.  Yes, you heard right.  10:45 PM.

Because the new Dr up in Denver requests any new patients have to have had a recent MRI within the year, (his last one was in 2010) so, when making the request for husband, Dr A's nurse said we might have a 3 month waiting period to get in.  Luckily, she was able to book him in at the main hospital where they do MRI's 24 hours a day as they are also on stand by with the ER.  So, they squeezed him in.

I dreaded it all day yesterday.  But, it wasn't bad actually.  Husband was not too confused and we got in and out right away.  Also, his first MRI was a total body scan, and this time it was only the head.  Cause we all know what's wrong now.

I am going to call Dr A's office tomorrow and leave a message for him to read the MRI.  I want to know what the brain looks like now.

Husband's eyesight is failing him.  He has trouble seeing everything.  Is the part of the brain that controls the eyes being affected now?  I personally think so.  It happened so suddenly, within the past 3 weeks. 

This monster has taken away his ability to walk, talk, think.  Now, is it claiming his eyesight as well?  What a crappy situation.

Husband did not sleep well last night.  Could be he was overtired.  Too much stimulation.

Now all I can do is wait it out.  I want to get answers in regards to the eyesight. 

Wow, Alzheimer's has really done a complete and thorough job on husband.  Doesn't leave
anything untouched.

Always making sure when it "does it thing", it shows no mercy.