Almost normal

So, today is a new day.  Yesterday, not so great.  I went to a dark place and had a hard time coming out of it.  I cannot and will not let this get me down.  So, for today, I will be in a better place.  I have to.

I had posted a while ago about having a Home Health Nurse come in.  After doing the paperwork, I was told it could take as long as 2 months, or, as short as 3 weeks.  Being that we are moving in 2 months, I have decided to not have a nurse come in until we get settled up in Colorado.  I don't want husband to be any more confused than he already is.  So it'll be put on the back burner until late summer.

For the time being, I can handle husband.  He relies on me for everything.  He doesn't like the idea of a nurse, but, I have told him that this way, I would be able to get out and run errands, grocery shop and he seemed to understand that.  Of course, he told me that he could just go with me, running errands and grocery shopping.  Uh, no, he can't.  My rules, remember?

Here, at my apartment complex, you are required to give a 60 days notice if you don't plan on renewing your lease.  I was given a lease renewal last week.  They offered me a 12 month lease price, a 15 month lease price or, if I choose to go month to month, the price is outrageous.  It is, in fact, $300 more per month if I go month to month.  When I read that, I almost fell off my chair.  $300 more?  And, if I choose to move at the end of my lease, I will have to pay that outrageous price, prorated, of course, for the 10 days I plan on staying here in August.  With paying for the new apartment up in the Springs, renting a truck, gas, plus a deposit, why, I will just not have enough.  Outrageous, I'll tell you.

When I pay my rent for June, I will bring in my written 60 day notice (required), and see if they will work with me.  It's only for 10 days in August!!

That's been on my mind. 

For the most part, husband had a decent day yesterday.  No hallucinations.

When I put him to bed last night, I told him there would be no getting out of bed in the middle of the night.  I jokingly, (OK, not jokingly, but, he doesn't know that) told him that if he got out of bed and wandered the apartment, he would be in big trouble with me in the morning.  He slept all night.  Yay.


When I got up this morning, he was awake and said, "Well, I was good and didn't get up."  We had a laugh about that.  I told him he was a good boy for not only staying in bed, but, for remembering to stay in bed.  He seemed to get a kick out of that one.

So, we woke up off to a good start today.  I really, really like waking up to a good start.  It all seemed almost normal this morning. 

I like that word.  Normal.


 

Finding smiles

And the dog days of summer begin.  Even if it's not summer yet, I feel it.  I am tired today.  I am frustrated today.  Husband was not great yesterday, but, not good either.

He got me up 2 times in the night.  The 1st time, there he was, trying to pull the covers off the bed again.  I was having none of it.  I told him sternly, "Do not do this again."  Got him settled in bed.  Fell instantly back to sleep, only to be jarred awake 1 1/2 hours later with him turning on the bedroom light,  waking me instantly and practically blinding me.

This time, I was not so nice.  I told him if he did this again,  I was going to be very angry.  That, somehow, always seems to work.  He looked up at me and said, "Why are you so mad?"  I told him again, "I mean it.  Do not do this again.  Night time is for sleeping, and you will go back to sleep.  Do you hear me?"

I know he can't help it, but, I have to take control when needed.  I have to put my foot down.  These sleepless nights are draining me. 

I actually hate it when the sun goes down nowadays.  I know he suffers from Sundowners, (don't need a diagnosis for that, it's obvious) and it can be daunting, but, somehow, someway, I have to get through to him that there is nothing to be afraid of, and night time is for sleeping.  Period.

Who's da boss?  Me, dats who!

I hate being this way.  I hate waking up in the morning feeling angry and frustrated.  Almost to the point of resenting husband.  He's sick and dying, and here I am saying "Or poor me".

Hate is a strong word.  Lately, that's all I've been feeling.  Hating everything around me.  Hating this city, hating my life, hating the days, hating the nights and hating my apartment.

And, hating Alzheimer's.  Just saying the word makes me want to spit hot nails out of my mouth.

No, it's not a good morning for me.  I can't show my frustration in front of husband.  I've got to dig deep today.  Find a smile as I bathe him.  Find a smile as I dress him.  I think I can do it.  I'm a really good actress.

So, excuse me if you will, I've got to go find some smiles.

Before

I can honestly say, yesterday was such a good day.  Almost like old times.  Oh, such fun we had.  Each kid brought food.  Patrick did all the BBQ'ing.  I made potato salad and stuffed eggs.  We had BBQ'd chicken, cheeseburgers and hot dogs.  Food was good, company even better.

Brittney, Jack's girlfriend, came as well.  A soon as she got here, she told me Jack wanted her to set up a Skype account for me, so I could see him on the computer.  When she was done, she got him on Skype and what a great thing for me.  He got to talk to everyone and then it was Mom's turn.  We had a good conversation.  He showed me his room, showed me his view outside his room.  Germany is really pretty.  Now, all I have to do is Skype him and it's like having him here.  I couldn't thank Brittney enough.  She's a sweet girl.

Husband was good yesterday.  I don't think he hallucinated once.  He was confused most of the time, smiling, but, oblivious to everything and everyone around him.  I would look at his face and know that he was just lost in his world, but, no hallucinations were present.  At least, for one day, I got a break.  Him as well.

One of the kids came to me and said, "He doesn't look like him anymore."  I know, I said, I know.

Before I went to bed,  I asked God to let him sleep all night.  I sure could use a good night's sleep.  God answered my prayer, as he slept all night, with only one exception.  He did wake up and was trying to get out of bed.  I talked him out of it and he did lay back down and went back to sleep.  Oh, glorious sleep!

I had a dream last night.  In this dream, husband was well.  We were waking and talking, holding hands.  He was exactly like he used to be, before he got sick. I would look up at him and we would kiss, saying we loved one another.  I remember in this dream it was very sunny and bright outside.  I remember feeling so good inside. 

When I woke up, it was dark outside and I turned over in bed and there was my reality. 

Husband, sleeping fitfully, jerking and moaning.

Today, as the rough moments come, I will think of my dream.  I will remember what it was like.  Before Alzheimer's.  Before all of this. 

Yes, it was good.  Before.

BBQ time

The kids have decided to BBQ at our apartment today.  Our grounds are so nice, with grass, trees, the duck pond with the water fountain and BBQ pits throughout the complex.  I am looking forward to it.  Been awhile since we have all gotten together.  Too bad the pool isn't open, or the hot tub.

Had some interesting moments with husband yesterday.  I was tired, so, I made him lie down so I could take a nap.  Just as I was dozing off, he suddenly sat up and yelled my name out.  Then, he proceeded to tell me that it was unfair that "they" were making him buy tires when he wasn't allowed to drive.  Why should he have to go measure the tires, it wasn't fair, he kept saying. 

Keeping my cool, as he was pretty upset, I gently told him that we were home, he was having a bad dream.  When he hallucinates, I always tell him it was a bad dream.  Most of the time, during the hallucinations, it will calm him down if he is angry. 

It took me awhile, about 1 1/2 hours, but, he finally came out of it.

The rest of the day was on and off.

Around 7 PM, he wanted to fill his water bottles.  I have two water bottles for him.  They are the Brita bottles, with the filter inside.  He filled them, put them on his night stand and kept staring at them.  Picked them back up and emptied the water out, only to fill them up again.  What a mess he made in the bathroom!  I told him that was enough, no more.  He said I was being mean to him.

Around 1:45 AM, I woke up, jarred out of a deep sleep.  There was husband, pulling the sheets and comforter off of the bed.  He gave me no reason why he was doing that.  In husband's case, there is no rhyme or reason for his actions.

Remember yesterday's post when I said we go from 0 to 60 in 2.2 seconds?  Yeah, like that.

I got him settled back into bed where he kept arguing with me that I was making him go to bed when he was right in the middle of eating.  I told him it was the middle of the night, he was not eating, now, it was time for sleeping.  Once I got him covered up, (re-making the bed. Snarl),  he said, "OK, if I go to sleep, can I go home, please?"   Again, I assured him he was home.  He was having none of that.

By 2:30 AM, he was sound asleep and there I was, wide awake.  No wonder I have dark circles under my eyes.  Ugh.

Yes, I am looking forward to our BBQ today.  I'll get to hang with my kids, they will take turns with husband, helping him, maybe even taking him for rides around the complex.  They are so patient and kind when it comes to daddy. 

And me?  I'll sit back and watch them interact with daddy.  I'll take a picture of it in my mind and save it for when he is gone.  All the smiling faces of my kids.  So happy to be with him. 

Yes, it's going to be a good day.

Should I stay or should I go?

I was thinking yesterday.  Why, oh why do I allow myself to "go there", I have no clue.

But, I was thinking about when husband is gone, do I close this blog, or, keep it up in hopes that someone, somewhere out there may stumble upon this and see what survivors do after their loved one has passed?  To read of my journey and compare it to theirs?  Or, if they too are suspicious of strange behavior, (in the beginning) and wonder if their loved one has been affected by this horrible disease?  Have they ever even heard of Early Onset Alzheimer's Disease?  Is it possible for someone in the prime of their life to be struck down like husband has been? 

Oh, yes, my friend, it is possible.  I'm living proof of that. 

I started my book way back in late summer, last year.  I haven't been able to get back to it.  Then I started thinking, maybe, just maybe, I could publish this blog?  Maybe someone, wandering through a bookstore would find this published blog, glance through it, buy it, and maybe get some answers from it?  Maybe this person has questions as to why their loved one is acting strange, subtle at first, but, strange all the same.  Could it be that this person thinks they are losing it, or, imagining this strange behavior?

I did, back in 2008.

Oh, what a road I've traveled.  Oh, what a road I'm still traveling.  We can go from 0 to 60 in 2.2 seconds.

When looking at husband, I see how much his facial features have changed.  He just doesn't look the same. 

Last night, my wonderful neighbor invited me outside to have a glass of wine with her.  I don't drink, but, oh that was good.  It relaxed me.  Felt a little happy inside too.

Saw husband wandering the living room.  I had put him to bed earlier.  I went in and asked him if he was OK.  He was hallucinating, saying he couldn't get to the bedroom.  I got his walker, and took him to the bedroom and our bed.  He said that our bed didn't look like our bed.  I assured him it was.  I got him to sit on the side of the bed, all the while talking to him softly, calling him "sweetheart". 

Once he sat on the bed, still unsure if this was really his bed, he looked up at me and said, "Will you help me?"  I gently coaxed him to lie down and lifted his legs up on the bed.  Got him settled, and went back outside to finish my glass of wine.

When I sat down, my neighbor started to cry and said, "Oh, Sue.  That was so beautiful the way you handled him.  He was hallucinating, wasn't he?"  Yes, my dear, he was hallucinating.

A little bit of a rough night around 2:30 AM. 

So, you see, when husband is gone, I think I may keep up this blog.  There's someone out there who needs me!!

Maintenance man, please fix my walls!!

5:30 this morning, sound asleep.  Suddenly, I hear the beep and click of husband's scooter chair in the living room.  I turned over, saw husband was not in bed.  Throwing the covers off, I run into the living room to find husband riding his scooter chair.  Asking him what he is doing, he looks up at me, not recognizing me and says, "I have to go home."  I get him out of the scooter chair and guide him back to bed.  He says he has to go to the bathroom. 

As he is in the bathroom, I go to his side of the bed to straighten the covers.  I wanted to get him back to bed, to sleep.  I wanted to go back to sleep as well.  Pulling the covers, I felt something wet.  Soaking wet.  Felt the sheets.  Soaking wet.  The mattress cover and mattress.  Soaking wet.  I said a bad word under my breath.

Got my side of the bed ready for him.  I told him he would have to lie on my side of the bed because he had wet his side.  He said he was sorry, I told him not to worry about it.

He is now sound asleep and here I am, awake.  I've just about finished my espresso.  Or, my first one of the day. 

Good morning everyone. 

Before maintenance came yesterday morning, husband told me to remind them that they needed to fix the walls.  He said the walls move and he wants them fixed.  I said I would.  Better to agree.

I had husband outside when maintenance drove up in the golf cart.  Thinking he had forgotten about the "moving walls", I was leading him into the apartment when husband stopped him and said, in a very sluggish and slurred speech, "Don't forget to put new drywall in there."  Maintenance man, being maintenance man, said, "Huh?"

I took (pulled?) said maintenance man just inside the apartment and said, "Look, my husband is very sick.  He has Alzheimer's and is in the late stage.  He thinks the walls are moving as he hallucinates quite often.  Can you please just humor him?"

The poor guy.  He looked at me and said, "Oh man.  I'm so sorry.  Of course I'll go along with it."

While he was here, he asked me about husband.  He said, "I thought you only got Alzheimer's when you were old."  I gave him about a 3 minute run down on his type of Alzheimer's.  Maintenance man was genuinely affected by husband.

As he walked out, he went to husband, still sitting on the porch.  He bent down and said, "Sir, I've fixed your walls.  You shouldn't have any more problems.  If you do, call me."  He looked up at me, smiled and winked.  I winked back.  Insert a slight chuckle on both our parts.

The rest of the day, we relaxed.  He would say odd things here and there, but, for the most part, he would be locked in his own world. 

And that's just what it is now.  Locked into the unknown world of Alzheimer's.  I don't know where he goes, but, I'd like to think it's a special place.  I have to think that.

Could it be that he is seeing the "other side?"  Getting glimpses now and then?  When he says he "wants to go home,"  is it Home, as in Heaven?

Yes, I like to think that.  Maybe he sees how beautiful it is on the "other side" and doesn't want to leave.

I don't want him to suffer anymore.  When I think of him being gone, my knees get weak.  Oh, I don't want him to die.  He's my husband.  We had plans, him and I.

Ah, life.  Or lack thereof.

Birthday recap

Husband's birthday was, in a nutshell, not pleasant.  He woke up lost in his own world.  It was all downhill from there. 

It all started when he got up from bed and I went in to sing him HAPPY BIRTHDAY.  Once I got a closer look, I could see he was not right.  As I sang to him, he stared straight ahead, not even realizing I was singing to him.

He began to search for his wallet. It was not on his nightstand and so, the search for the wallet began.  It started around 8 AM.  By 2:30 PM I was completely nuts.  He kept insisting that someone had broken into our apartment and took his wallet.  Knowing this pattern of behavior, I knew he had hid it and couldn't remember where.  Of course, I searched the bedroom over and over.  I even checked the clothes hamper.  I searched the linen closet.  I checked the drawers in the bathroom.  I looked in the bathroom wastebasket.  The trashcan in the kitchen.

By afternoon, I was spent.  I went outside and asked God to help me find his wallet.  10 minutes later, the wallet was found.  In between the mattress of our bed.  I had checked there before, but, didn't go deep enough. 

Husband showed no emotion once the wallet was found. 

During the big search, calls were coming in, wishing him happy birthday.  Also in between, I somehow managed to make him a birthday cake.  Not carrot cake this time.  He wanted German chocolate.

I would have to tell him who was calling and hand him the phone.  He was polite on the phone, but, didn't know how to hold it.

After dinner and dishes, I went outside to get some fresh air and try to relax some.  Husband called me in and said someone had taken his wallet again.  He did it again!  I was on the verge of tears out of frustration.

It took about 30 minutes and we found t.  I then became very stern wit him and told him if he hid that wallet again I was going to be very angry with him.  "The wallet stays right here.  Do you understand me?  If you don't behave, I will be very angry with you.  You need to behave!!"

I just couldn't help it.  I had had it.  That seemed to do the trick, but, he wanted to know why I was so upset with him, he didn't do anything.

Oy,oy, oy.

Husband woke up early today.  One look at him told me he was not there.  As I sat down to blog about his birthday, I suddenly noticed a mess in the bedroom.  He had taken all the pillows off the bed and had pulled some of the vertical blinds off the track.  His walker was upside down on the floor.

Once I got in there, he told me he was trying to get out of the garage.  I told him we are home.  He doesn't believe me.  I have to call maintenance this morning. They have to replace 3 of the verticals. 

What a joke.  Yeah, husband made it to his 48th birthday.  Something those before him did not.  But, at what cost? 

It has been a week today that he has been lost in his own world.  It happened so fast.  He has not come out of it.  I don't believe he ever will.

That's it, folks, he's gone.  I know it now.  I have to accept it.  I hope God still speaks to him.  I hope he still speaks to God.  I hope he understands God.

I don't want to see him suffer like he is.  I want God to take him Home. 

Enough!

Milestone

Today is a new day.  I will start it off in a good frame of mind.  After yesterday's fiasco on Facebook, lasting late in the evening, I have made up my mind to accept people for their ignorance, but, put those said people out of my life.

I got some backlash, (ignorance again) and decided to end it there.  In my last words, I told said ignorant people that I certainly hoped one day they could experience what I'm going through and we'll see who laughs then.  Oh, dear me, said ignorant people thought and said that I had "cursed" their spouses with Alzheimer's.  Once again, ignorant.  My last statement included advising said ignorant people, that if you put it out there, prepare for some to be offended.  That's it, end of story.

Now, today, husband's birthday.  I will make him a cake and he, hopefully, will be aware of his surroundings. 

He kept thinking he was not home yesterday and kept asking me when we were going home.  He even started to pack up the closet.  I kept calm, telling him that we were home.  He looked at me once and said, "Are you sure?"

Last night he was pacing, or, trying to walk up and down the hallway.  He was holding onto the walls, shuffling his feet.  That's the way he walks now.  I asked him what he was doing and he said, "I'm making my legs strong.  Exercising so I can walk better."  I said nothing.

His eyesight has been fading at an alarming rate.  I don't know if it's the part of the brain that is being damaged, or, his eyes have drastically changed.  I believe it's  the damaged brain.  It's just too consistent of brain deterioration. 

Seeing this new Neurologist in September will help some.  This new Dr requires a recent MRI.  I have put in a request at Dr A's office and should hear something today.

Husband had an MRI 3 years ago.  The brain appeared normal.  Of course, he was in the early stages at that time.  Alzheimer's is very hard to detect in the early stages, as the brain has not yet begun to shrink.  Unfortunately, the new MRI will show deterioration.  I'm almost certain of that.

So, kudos to husband for making it this far.  It's a sad day for me, but, I will not think about that when he is around.  I will smile and act happy, making him feel like a king.

It is, after all, his birthday.

And a milestone of a birthday at that!

Laugh idiot, laugh

I have a Facebook account.   I read some of the stupidity put out there, some of the funny stuff, some of the family stuff.   I rarely comment.  Until today.

One of my "friends" commented about how she was rolling in laughter because of a commercial she just saw.  It was about Men's protective underwear and she thought it to be hilarious.  There was a comment from another idiot that agreed with her.

Guess what?  I commented!  I sincerely hope I offended both of these idiots.

I am so upset, I can't even post about our day yesterday.

No more nothing

Husband has continued a downward spiral.  It's heartbreaking to watch.  So many new issues have come up.  Just to name a few:

Husband has started crawling.  When he can't stand, he gets on all fours and crawls.  This started Saturday night.

He has trouble seeing.  He'll ask for his glasses, put them on and hold whatever is in his hands close to his face.  Then, he'll say, "I can't see it, what is it?"

When placing something in his hands, like pills, you have to guide his hand to close, or else, it'll drop right out of his hand. 

Father in law came yesterday.  I was sitting outside.  Husband was in his scooter chair, head dropped, asleep.  We talked on the porch.  What a bond we share.  We have become so close.  He said he had a hat for husband and money for this birthday.

After about 1/2 hour, we went in the apartment.  I woke husband up and said, "Look who's here."   Husband looked up and did not recognize his own dad.  Father in law bent down and handed him the money.  Husband, not knowing what to do, stared.  I lifted his hand up, and father in law placed the bills in his hand.  Seeing that husband's hand was not closing, he gently reached down and closed his hand.  It was such a touching moment.

You could see that father in law was taken aback by this sudden turn.  With his voice breaking, he put his hand on his shoulder and said, "Happy Birthday, Son."

I went into the kitchen and husband said to his dad, "My dad is coming to see me."  Father in law leaned back on the chair as if someone had pushed him and said, "I'm your dad and I'm here."   Husband smiled.

They had a nice visit.  After FIL left, husband brought me his wallet and asked me if I could put his money in his wallet.  I looked at him, surprised.  He said, "I don't know how to do it."

I am not looking forward to Thursday.  It's something of a milestone for him.  But, for me, I know deep inside of me, this will finally be his last birthday. 

This birthday will be spent quietly.  No more BBQ's for Daddy.  No more secret phone calls asking me what to get him for his birthday.  No more surprises.  No more big family get togethers. 

No more nothing.

So, on Thursday, I will make him feel happy, I hope, if he even remembers it is his birthday.  I will make him a cake.  I did not buy him a gift. 

Ah, this is crappy.  And sad.  And hard.

Gulp. Bracing myself for Thursday.

Life Lessons

Husband has been very quiet.  He didn't speak much yesterday.  He did, however, tell me about the baby that was born in my living room yesterday morning. 

He said he closed his eyes real tight when the baby came out.  I asked him if the baby cried.  He giggled and smiled, then said, "No."  I didn't bring it up again.

Kristen called in the morning.  I told her about this sudden decline and the hallucinations.  She wanted to talk to him.  I put the phone on speaker, as he doesn't at times, know what to do with a phone.  I heard her say, "Have you been behaving, Daddy?"  He would giggle and say he had been good.  She said that she was going to come for a visit today, on her day off.  He loved that.  I love that too.

He told her about the baby being born.  She is so good, all she said was, "How cool."   Then, he lowered his voice and said, "Mom doesn't believe a baby was born here, but, you and I know it happened, right?"  She, loving him so, said, "Yep".

For the rest of the day, he spoke very little. 

He came to me and said, "For my birthday, could you get me some clean clothes?"  I told him  he had clean clothes.  He didn't like that answer.

He has been obsessed with going to the bathroom.  With all this bathroom stuff, I had to change his diapers 3 times yesterday.  Usually, I put clean ones on him in the morning, lasting through the next day.  Not anymore.

After dinner and dishes last night, he told me "the man" had peed all over him and I needed to give him a shower.  He was soaking wet from the waist down.  I got out his adult wipes and wiped him down, putting a fresh diaper on him.  I also put baby powder on him, making him smell clean.  As I did so, he sighed and said, "Oh, that feels good."

Some folks never get to experience something like this.  For some reason, God wants me to experience this.  I'm no saint.  I've never won a Pulitzer Prize, Academy Award, nor am I a household name.  

I am just an ordinary woman, wife and mother.   I have become more aware of things some people would never have even thought of. 

Ah, life and it's many challenges.   Lessons?  Been there, done that.  Still doing that.  They say what doesn't kill you makes you stronger.

Anybody got a car they would like lifted?  Home?

Going Home?

Yesterday was eye opening for me. 

Sometime, during the night, I believe my husband slipped into another world.  It has been so sudden, Alzheimer's didn't give me a chance to warm up to the fact that husband may be completely gone now.  It's just been so fast.

Husband was in a complete state of hallucinations, all day long.  As I sat outside in the morning, he came to the living room window and asked me how he could get on the porch.  I told him.  After I had helped him outside, he said, "Wow, I didn't know you could go through that door and be outside."

After a few minutes, he asked me, "Where are we?"  I told him, "We are home, honey."  He looked at me skeptical and said, "Well, I don't know about that."

One time, he had pulled his wheelchair inside and told me it was broken.  He was going to get some tools to fix it.  I talked him out of that one, said nothing was wrong, it just had the brake on.

Came in the house from planting some of my flowers and there he was, in all his glory.  Naked.  Said he had peed all over himself, was soaking wet, wanted a shower.  I felt his chest, dry as a bone.  His diaper was on the ground, dry.

Wanted him to lie down and take a nap.  He went to the bathroom, came out and I told him to turn the light off.  He said, "No, "He's" in there."

Yes, "the man" is back. 

Later, took him back outside because it was so pretty yesterday.  Told him to sit in  his wheelchair.  Went in to make an espresso, came back out to find that husband had turned his wheelchair upside down to sit on it.  How he stood, turning over that heavy wheelchair is beyond me.  Turned it upright, shaking the whole time and told him to sit.

After dinner, he came out of the bathroom (again, all day long, it was the bathroom).  Told me he needed to take a shower.  This time, he told me, he had oil all over his shorts.  What?

Of course, there was no oil on him or his shorts.

Several other instances throughout the day.

Wanted me to take him home, again.

Insisted he needed a shower, again.

At 5 AM this morning, he woke me up and told me a baby had been born in the living room, I needed to come quick.  He said he had been stuck on the couch (I got rid of our couch when we moved here) and couldn't get to me, but, a baby had been born.  I got him back into bed and as I was dozing off, he said, "Aren't you gonna check on the baby?"

I will see what today will bring.  He is up and in, yes, you guessed it, the bathroom.  He is going to have a bath this morning.  If it gets worse, I will have no choice but to take him to the ER to have him evaluated. 

Has he slipped into the unknown world of Alzheimer's?  Is he gone for good now? 

There is such a heaviness in my chest.  I am so sad.  Not for me, mind you.  For him.  He looks so helpless, so, so lost.

If he's going to go, please Lord, let it be fast.

Kuddos to you, Alzheimer's!!

Yesterday was not a good day.  My mood was dark and husband was not in a good place. 
All around, it was a really crappy day.

To make matters worse, husband suffers from a form of "Sundowner's", another rather unpleasant side to Alzheimer's.  Some patients suffer only "Sundowner's", with it only affecting them when the sun goes down.  They go throughout their day seemingly unaffected, but let the sun go down and they become lost, confused, angry and feel the need to wander. 

Not only does husband suffer from the total affects of Alzheimer's, he also goes from bad to worse when the sun goes down. 

Some nights, he's OK.  Other nights, not so OK.  With it being lighter longer, I begin to automatically stiffen up, bracing myself for the worst around 7 PM.  And then, BAM, out of the blue, husband will become accusing, lost, confused, refuses to listen to me, angry.  He reminds me of a caged animal wanting to get out of his cage.  Only, the cage is his mind and there is no escape.  Luckily (?), there is no violence.  Just sheer terror in his eyes.  He's so scared.

Nothing will relieve it.  His anti-psychotic may relieve it somewhat, but, I have to ride it out with it usually lasting 2-3 hours.

Every.  Single.  Night.

Nighttime for me, used to be relaxing, winding down from the days activities.

Nowadays, not only are my days usually filled with all the perks of Alzheimer's, by nighttime, I get the opportunity of witnessing husband go even further into hell.

Huh, it's not easy being me.  At least, today it isn't.

Too Much!

One week from today is husband's birthday.  His 48th.  He now has officially lived longer than his mother, uncles and grandfather.  They all died before their 48th year.  Will this be his last year?  Who knows.  Probably. 

I thought a lot about this yesterday.  I would catch my breath when I thought about it.  It's a little scary think about.

As I sat outside this morning, espresso in hand, I thought back to when he could walk normal.  Before the monster made his appearance.  And, I couldn't remember how he walked.  That bothers me.  I try and try to think back when he was well. 

I can't remember even the little things.  Like walking.  Driving.  Working in the yard.  Holding conversations.  Eating.  Talking on the phone.  Dialing the phone. 

It's all been taken from us.  Everything.  Our memories, our family life, our future.  Everything.  Gone.

I am left with what I am left with and there's nothing I can do.  No magic pill can be taken to make it all go away. 

This morning, as I think about it, with espresso in hand, I am bitter.  Hey, I'm human.  I need to have these bad days to learn and grow.  Tomorrow may be different.

But, today, I'm bitter.  It's just too much right now to think about.

Tell us how you really feel?

Had an OK day yesterday.  Husband was in and out of reality throughout the day.  One minute he'd be with it, the next, well, he would want to talk to me about finances (to which he knows nothing anymore) and would get mad when I would tell him I don't talk money with him.  On and one the day went.

By evening, he was pouting in the bedroom.  I did my normal stuff and ignored him.  That seemed to work, as he soon came out of it and was fine.  Until, that is, I got into bed, exhausted.  He started in again, wanting to know where all the money goes.  I very sternly told him I will not talk money to him and it is time to go to sleep, Goodnight!

I read somewhere that Alzheimer's patients do sometimes become obsessed about money.  Also, a little paranoia sets in, in regards to money.  They think that someone is taking all their money, as in my case, and all of a sudden they want to take control back and manage their own money.  Not so fast, husband.  Never gonna happen. 

No falls out of bed last night, no wandering the apartment either.  He did wake up once to go to the bathroom, but, thankfully, no hallucinations.  He's getting up now, so, I will soon find out what side of the rainbow we are on today.

All joking aside, he is not doing well.  I had him outside on the porch last night.  We had a beautiful rain storm, with thunder and lightening.  So refreshing.  When we came in, I noticed he had left the walker outside.  I asked him about it, he looked at me as if I were looney.  Needless to say, I brought it in for him.

Know what's interesting to watch?  Our light switches for the bathroom and kitchen are on the outside of these rooms.  Odd, I know, but I just got used to them being there. 

Husband, on the other hand,  will go in the bathroom, back out and I have to remind him each time where the switches are.  He will stare at them as if he's studying those blasted switches.  There are two switches.  One for the fan, one for the light.  There he stands, holding onto the wall and just looking at those switches like they are some foreign object.  Interesting to say the least.

As far as husband doing his closet thing, yes, I think it's to keep his mind busy.  He needs some stimulation, and he can control that aspect, so, we arrange and re-arrange the closet on a daily basis.  All day.  Every day.

Now that our new apartment is waiting for us in Colorado, I need to keep calm and try not to get so anxious.  We have 3 months to go.  Not long, but, long enough.  I can't wait to pay my rent for June and officially give them my 60 day notice.  I will also point out that, when husband was beside himself with "the man" in the closet, making 2 unscheduled trips to the Dr, with the Dr putting him on anti-psychotic drugs, they would not work with me in getting rid of the mirrored closet doors.  Just didn't want to be bothered.  Of course, I removed them, however, when rent time rolls around and I give notice, I will mention how dangerous those mirrored doors actually were to husband's mind.

Oh, yes, they will know just how I really feel.

Thank you for your prayers in obtaining our new apartment in the Springs.

Off to a new day.  I certainly hope it will be an OK day. 

The OK days are few and far between now. 

Just breathe

Well, I wanted to come on here yesterday morning and post about how wonderful my Mother's Day was.  However, Alzheimer's always wants to throw a wrench at me.

Husband began to hallucinate around 4 AM yesterday morning and it took me 4 hours to bring him out of it.  By that time, I was spent.

Husband was hallucinating to the mirror in the bathroom.  Said a murder took place in the mirror.  My first thought was, "Oh no, not the mirror again."  It took me awhile to calm him down and get him out of the bathroom.  Once that was done, I got him back to bed and to sleep.

Next thing I knew, I woke up to find him gone.  I yelled his name out and he answered from the living room.  There he was, sitting in the recliner.  I went to him and asked him what he was doing.  He looked up at me and said, "I don't know where I am at." 

If you have ever witnessed a person hallucinating you'll understand.  The look in his eyes is not pleasant to look at.  They turn very dark and he takes on a whole different look.  His bottom lip turns down, and his jaw changes the shape of his face.  He doesn't look like him.

It is, in a word, awful.

This morning, as I was making my espresso, he shuffled into the kitchen.  Surprised, I said, "Well, good morning."  He had that hallucinating look.  My heart fell.  He looked straight at me and said, "Where is your bathroom?"  He had just walked past (when I say walk, I mean he held onto the walls and drug his legs)  the bathroom.

I am hoping today will be better, but, who am I fooling?  It'll never get better.

On the bright side, my Mother's Day was just great.  Jack called me from Germany!  My  children.  The total joys of my life.

And, good news!!

I got approved for the apartment up in Colorado Springs!  Colorado, here I come.

The ups and downs of life.  Just when I thought yesterday couldn't get any worse, I get  the call that the apartment is mine in the Springs.

3 months to go and counting.

Breathe, Sue, breathe.

Happy Mother's Day!

Ah, Mother's Day.  Happy Mother's Day to all of you out there.  I hope your day will be great.  Mine?  Well, let's see.  I don't know how it will be spent.  Can't plan anything.  It all depends on this monster that lives in my house and invades every part of my life.  24 hours a day, 7 days a week.  So, tomorrow this time, I'll let you know how my Mother's Day was.

Husband slept the entire night with no interruptions.  I backed the walker up against the bed again, keeping him from falling out of bed.  I got 7 hours of sleep!  Yay.

Aside from sleeping all night, husband is not doing well.  He has had hallucinations throughout the day, but, mostly at night.  Seems when the sun goes down, he begins to get confused and lost.  If I turn on lights when it starts to get dark, it's helpful, but, it confuses him no matter what I do. 

The hallucinations aren't violent, just complete utter confusion like not knowing who I am or where he is at. He also, at times, begins to try to put his shoes on, telling me he is going to be late for work and needs to get going.  It takes me awhile to bring him out of it. 

The re-arranging of the closet is on going.  Day in, day out.  I am amazed at this behavior.  He never tires of this.  It starts in the morning, with breaks throughout the day.  He will put everything back in, sit on the side of the bed, looking at his work.  Then, he will start it all over again.   Makes me tired just watching him. 

His speech is getting garbled.  It's hard for even me to understand him. 

Father in law came for a visit Thursday.  That was nice.  Husband enjoys his visits.  They talk about old times, when husband was growing up.  He'll say things like, "Remember when you fell and skinned your chin on the bike?"  Husband, for some crazy reason will remember that.  It's crazy.  He remembers that, but, can't remember who I am at times.  I'll tell ya, this Alzheimer's is one odd disease.

Still no word on whether we have been approved for the new apartment up in the Springs.  Maybe I will hear something tomorrow.  Maybe today?  What a nice Mother's Day gift that would be.

So, here's to Mother's Day.  May your day be filled with love, family and gratitude from loved ones.

 

Jane's sisters invited me up to her house yesterday to give me a few personal items they knew I would like to have.  It was different being there without Jane.  I kept expecting her to come around the corner, walking that funny, cute little walk she had.  I felt a wave of sadness creep over me. 

I had requested a pencil drawing of her little boy, Kenneth.  I didn't remember how big it was.  He was about 8 years old at the time of this drawing.  I will cherish that.  I also got a picture of Jane & Bob around the time I met them, 22 years ago.  Little things here and there.

One of the sisters brought me this beautiful plate.  It has delicate flowers on it.  It's probably the size of a salad plate.  She said, "I want you to have this.  It's very old, probably from the 1800's and valuable.  It has not been appraised, but, we want you to have it."  It has gold painted around the rim.  Stunning.

All of the stuff I got will be placed in honor of Jane, Bob and Kenneth in our new apartment in Colorado Springs.

Speaking of which, I did all the final paperwork on the apartment up in the Springs.  Now, am waiting to see if we qualified.  I'm sure we will, but, there's always this shred of doubt that finds it's way into my mind.  Prayers?  Please.

Husband fell out of bed last night.  It took me about 30 minutes getting him back up into bed.  I blocked him in, using his walker butted up against his side of the bed.  Now, I have made up my mind that once we get to the Springs, he will have to go into a hospital bed.

As I crawled into bed, I asked him if he was OK.  He said yes.  Then he said, "Are we where we're supposed to be?"  I said, "You mean here, in our apartment?"  "Yes", he said.  I assured him we were where we're supposed to be.

Around 4 am, I woke up and husband was not in bed.  I found him wandering the living room.  He said he had to go to the bathroom, but, forgot where it was.  I guided him to the bathroom.  I got back into bed and when he was done he asked me where the bedroom was.  He was standing with is walker in the hallway looking for me.  He followed my voice.

Helpless.  Total helpless.

Because I am busy during the day, it doesn't come to mind just how hard this really is.  If I've had a particular difficult day with husband, it will hit me just as I am trying to go to sleep.  Then, I think, "Wow, this is really hard."  And, of course, all the difficult times ahead will invade my sleep. 

 I think about those coming times, what I will do.  I think about his end of life.  Will it be in my arms?  Will he go in his sleep?  Will he take a bad fall that will kill him?   Will a home nurse wake me up and give me the news that he's gone? 

No wonder I have dark circles under my eyes nowadays.  A trip to Walgreens is in my future.

Need to invest in some really, really good concealer.

Reflections

Yesterday was one of reflection of what was and what is to come.

Jane's service was elegant, yet, simple.  Just the way she lived her life.  She was a private person.  She held no grudges.  She always found it in her heart to forgive. 

As I sat at the graveside services, I looked around at the cemetery and found it to be peaceful.  I had my closure, knowing she was where she wanted to be placed, forever.  Next to her husband Bob. 

Husband's mother is placed just south of where Jane and Bob are.  Husband is to be placed next to her.  It struck me as I was leaving and happened to look up to where mother in law is.

Of course, husband didn't realize it.  He doesn't realize a lot of things anymore.

That was a little hard for me.  That final resting place.  But then, I looked at my husband, crippled not only in body, but, mind as well, a prisoner, and, I thought back to an old song I used to sing at church.

"It is well with my Soul."

Yes, I will miss him.  Yes, I will long for days gone by.  I will have my memories of my husband, big and strong and, healthy.  Gone are those days.  Replaced by a shell of a man he once was.  A man who, at times, doesn't even recognize me. 

As this peaceful feeling came over me for Jane, I know that same feeling will follow when I place husband next to his mother.

Yes, it is well with my Soul.

Imagine!!

We have had a rough weekend.  Husband started this spiral late Thursday night.  It has been non stop craziness since.  I have been so irritated with everything from A to Z.  I still haven't had time to properly mourn Jane.  I'll get that opportunity on Wednesday, when I attend her funeral, I guess.

Saturday is my usual house cleaning.  Everything I tried to do Saturday was interrupted by either husband or the dog.  So, so frustrating.  I got it done, but, what a day.

Yesterday was better, but, the irritation I feel is still there.

I am on Facebook, mainly to see what family and friends are doing.  I rarely comment because no one wants to read what I really have to say.

It seems like every other post lately is about how Cancer sucks or how to kick butt with Autism.  I often wonder what they would say or how they would react if I posted something like this:

"Yeah, well, how about Alzheimer's?  Ever wonder what THAT'S like?  Just because there is no cure doesn't mean it shouldn't deserve a post or two about this journey into hell.  Here's to the Alzheimer patient and oh yes, what about the survivors?" 

While Cancer is awful and so many people lose their battle with it, at least, for the most part, it can be treated.  With Autism, there is no death sentence.  Those suffering do have challenges, yes, but, they can live a full productive life.

Alzheimer's on the other hand, has got to be one of the most destructive diseases known to man.  I know, I speak from experience. 

Imagine waking up in the middle of the night and having your husband or spouse look at you and ask "Who are you?"

Imagine changing your spouse's diaper?  Anyone want that job?

Imagine guiding your spouse to the bathroom when he has forgotten where it is, when in reality, it is two feet from the bedroom door?

Imagine watching your spouse attempting to eat.  It's like looking at a 1 yr old shoving food into their mouths.

Imagine listening to your spouse attempt to talk.  Sounds like he has had waaaay too much to drink.

Imagine bathing your spouse.  A grown adult that splashes around in the tub like a baby.

Imagine, after bathing said spouse, you hand him his toothbrush and he says, "What's this"?

Imagine dressing spouse, with legs that are not only stiff as boards but are also like heavy leaden.

Imagine spouse asking the same questions throughout the day, only to ask again and again.

Yes, Cancer sucks.  It can be devastating.  Autism strikes innocent little children.  The parents who struggle with their children.

Then, imagine Alzheimer's.

"Ma"

Jane and I met in early 1991.  We had both gone to the same temp agency to apply for a job.  We were there at the same time and chit chatted while waiting for our separate interviews.

After our interviews, we were taking the dreaded typing test, together.  Then, the call came in from a local bank that had gone belly up and they needed two fast typists.  We were called in individually and offered the job.  Said it would be about 10 days, but the pay was good.  It was to start the following day.  I accepted and left.

The next morning I arrived on time and there was that same lady from the temp agency the day before.

We worked side by side for the next 10 days.  Jane had extensive banking experience, coming from upstate New York.  I, on the other hand had none.  The only thing I had going for me was that I could type fast.

Soon, our  days were up and I said my goodbyes to employees left behind in the wake of their bank folding.  I went to say goodbye to my immediate supervisor and she looked so surprised and said, "What are you talking about?  You're leaving?"  I told her that the temp agency said the job was for "about  10 days" and the 10 days were up.  She said, "You are not going anywhere.  We really need you."

Thus, began my career in Banking.

Because the bank had gone belly up, the FDIC had stepped in and unknown to us, the bank was up for sale.  After a few months of working there, Bank of America bought it.

All during this time, Jane and I became closer than ever.  She was older than me, married to Bob.  She told me their only son, Kenneth, had passed away at age 14 from Leukemia.  You could see the pain in her face as she talked about him.  He had been gone at that point about 12 years.  They had relocated to the Southwest right before we met.

If I would make a mistake on paperwork, she would kiddingly scold me.  I started calling her "Ma".  There were many people at the bank who really thought she was my mother.

After being a temp for 11 months, Bank of America hired me permanently.  Jane followed 2 weeks later.

Through the years, we remained close, calling each other often.  She sent a thoughtful gift when my Jack was born. 

Her husband, Bob, was the nicest, gentle and kind man.  He passed away in 1996.  Attending the funeral was hard on me, but, I was there to support "Ma".

Jane is the one I complained about here several months ago.  She was alone, lonely and became very demanding.  We had a good talk in early December and I told her that I thought she was being too demanding of me, that husband was very sick and I could just not drop everything and run to her when she wanted me too.  I pointed out that she had her other friend, Rhonda who lived 2 blocks away and that Rhonda would help her as well.  Once she saw husband, she realized just how really sick he is.  She apologized and then told me that she had cancer in her left breast and needed surgery to remove the whole breast.

Right before we moved here, I took her to the hospital for the surgery.  She came through fine. 

We became close again, like in the early days.  She knew of our impending move to beautiful Colorado.  One day she said, "Boy, I'm gonna miss you girl".  When getting off the phone with her, I would always say, "Love ya Ma."  Her reply was always a chuckle first, then, "Love you too."

"Ma" left this world in the wee hours, Thursday morning, May 2nd.  She has joined her Bob and beloved little boy, Kenneth.

Thursday afternoon, while sitting outside, a Monarch butterfly was circling my porch.  I kept watching it, darting in and out of my porch.  Through tears, I said to this butterfly, "Hey, Ma.  I see you."

Goodbye "Ma", my friend, mentor and "other mother".

And now for the Good News.

For a few years it has been my desire to leave Albuquerque.  When we came back here in late 2006, I made a vow to myself that this move back here was not forever.

Since husband became sick and the devastating diagnosis we received, I have reached out to all resources, with no positive feedback.  I have had doors slammed in my face.  I have had organizations tell me that this state only helps those who are on "the system".  I have been told that I should be happy we have any income at all.  I have been compared to families with healthy parents that don't work and they reap the benefits that taxpayers like husband and myself have paid into for many years.

I could go on and on.  Needless to say, it has left a bad taste in my mouth.

Since last summer, Tish and Jace have been telling me they want husband and I to move with them when they get their new orders.  I, at first, did not want to move in with anyone, and told her so.  None of us knew where the move would take them.  We were in the dark for many months.

It has always been a desire of mine to live in Colorado.  Husband's as well.

We found out in the middle of January that they got Colorado Springs!  I haven't said anything because  I wanted to discuss this possible move with Dr A.  I also wanted to find our own place because since moving here to our apartment, I have found I can make it financially on my own.  Not a lot of extras, but, at least I can buy food now!

Dr A said it might be a good idea, with having a strong support system with Tish & Jace.  He also said that I would probably have more resources up there.  Dr A said he would look into Neurologists in the Denver area and get back with me.

I started contacting apartments in early April.  When we moved here, I got a 7 month lease, telling them that I may be leaving the state during the summer months.  I found a complex that appealed to me.  All during April, they kept telling me they had no availability in August.

I contacted other complexes, but, kept going back to this one.  Living here, if you are to move, you have to give a 60 day notice. My lease is up here August 8th.  I was getting nervous as I have to give my notice next month, but, had no new place waiting for us up in Colorado.

Frustrated yesterday morning, I called the one I was interested in.  As soon as the girl answered, she said, "Oh, yes, I am emailing you as we speak.  We just got a 1 bedroom 1 bath available August 15th.  Would that work for you?"

Well, what do you know.  She sent me the application and lease agreement.

After dinner and dishes last night, Dr A called.  He told me he had learned that one of his colleagues' is director at UC Denver in the Neurology Dept.  He spoke with this new Dr, told him about husband.  The new Dr is very interested in husband and assured Dr A he would take good care of this "very interesting case." 

I called this morning and we already have an appointment scheduled for September.

So, that's the good news.  You don't know what this means to me.  My desire to leave has been made possible.

The adjustment on husband may be hard, but, he is so very excited.  It's all he talks about.  He keeps telling me that he and Jace are going to hunt and fish.  Of course, we know that will not happen, but, to see him be excited again makes my heart happy.

I woke up this morning and had an odd sensation.  It took me awhile to recognize just what that was.  Then, it dawned on me.

It's called Hope.

Big news! Good news!

Don't have time to post this morning.  But, I will try to come back here some time today to post some big news.

It's all good. 

Stay tuned!