Holding steady

I start working, for 1 week, on Monday.  As mentioned before, I will be filling in at my old job.  The girl who replaced me is going on vacation.  I get to be in the corporate world for a week.  Looking forward to that.

Took husband for a drive yesterday.  To get him out of the house.  Dr A does not like all this sleeping he is doing.  He enjoyed it.  It was cloudy and so much cooler.

One thing about this Alzheimer's is, while husband cannot remember the here and now, he can remember his childhood.  So many places we drove by and he would have a story to tell me about.  It was not made up, he was not delusional, as he has told me these stories before, when he was well.

To me, it's rather strange and bizarre.

While you can't understand what he is saying, I've gotten used to it and, if I strain my ears, I can understand a lot of what he is saying.  People who aren't around him much cannot understand him anymore.

We are waiting for his Scooter Chair to be delivered any day now.  Dr A wants him permanently in the wheel chair.  Dr said to put the walker away, it's time for the wheel chair.

Husband is excited for the chair.  It will be harder to take him out, as I have no lift for this motorized scooter chair.  I will have to use the regular chair when we go out.  Seems a waste to only use the good wheel chair in the house, but, as usual, I will make do.

Husband had a rough night.  Jerking lasted through the night.  Mumbled a lot.  Kept me up for quite some time.

The weekend is here, but, our days are the same,  the only difference is my regular daytime shows are not on.  

I can smell Fall in the air.  After this hot summer, I am so ready for Fall.  My favorite time of the year.

Not much else going on.  We are declining at a much slower pace it seems, or, are we in a holding pattern?

A funny thing happened on the way to PT!!

Missed me?  Needed some time.  I am still in that funk, not in a depressed or mad sort of a funk, just a ho hum kind of funk.

I've said it before.  My life used to be so full and busy.  Working, taking care of my family and home.  It has changed so much in the last 2 years.

My days are long now.  They can be boring at times too.  What with husband sleeping for most of the day and the house clean, laundry is done, there's not much else to do.  I find myself lately "going there";  to the time when it will be just me.  I find myself thinking, "Wow, I won't technically be married anymore."  I find myself thinking what will I do?

So many people think they can give me advice on what to do.  So many people think they know what is best for me.  While I appreciate the well meaning folks (and love them as well!!) and how they care, they have healthy husband's, they have financial stability and are not walking in my shoes.

Mind you, I'm not having a pity party for myself either.  One thing I will never do is pity myself.  I fully believe God chose me for this journey.  God knows I can do it.  God is present.  But, I do have my moments when I question if I can do it.  It's called being human.

I have learned many things about myself during all of this.  I know I'm a child of God, strong and level headed.

We are now at the stage of dressing.  Husband does not know how to dress himself anymore.  I make it a joke each morning.  I act as if I've been dressing him all along.

I had to take him to get a PT Evaluation on Wednesday.  It's for his scooter chair.  He came out of the bedroom and announced he was ready to go.  He had managed to put on his socks and shoes!!  I told him I was so proud of him.  He managed to put a shirt on too!!!

He was standing outside our bedroom door with the biggest grin on his face because, as he said, "I did it all by myself!!!!!"    Looking at him, getting ready to clap my hands together, I stopped in my tracks.  Yes, he did dress himself, but, forgot to put on shorts.  There he stood, shirt, shoes and socks and in his boxer shorts.  Oh, how we laughed over that one.  We laughed all the way to Physical Therapy as well.  I laughed as I was sitting there waiting for his name to be called.  It was so funny.

When all else seems hopeless, when one feels as if God has left them, when one get's so scared of the future alone, when one feels so alone, God makes His presence known and allows me to laugh.  A good laugh.

Thank you God, I needed that one.

Evening Rounds

 Going to Bible Study this morning, come home and not much else.

Husband has been wanting an Owner's Manual for one of this tools.  Don't ask me why.  He can't understand what he reads anymore, but, as usual, I go along with it and do what he wants.

About 3 weeks ago, I found a printer at a yard sale for $5.00.  Of course I bought it.  It works wonderful.

So, after dinner last night, I offered to print out this owner's manual for husband.  It printed beautifully.  Husband was amazed by what a printer can do.  He's like that now.  Gets amazed by what an oven can do, a microwave, a vacuum, a dishwasher, I could go on and on.  Really sad, that part.

Anyways, I printed this out for him, put it in a paper folder and off he went to the bedroom to gaze at this miracle that had just happened.  (Sorry, not meaning to be critical of him, it's just the way it is in my home on any given day).

Later, I went into the bedroom to give him his evening meds and there, strewn about the bed was this manual.  He had a look of total frustration.  He looked up at me and asked me to help him.  Seems he had gotten the papers mixed up and could not put it together again.  I picked up the pages, noticed they were numbered.  Told him to put it in order by the page numbers.  He looked up at me with the face of a child and said, "I can't."

He wanted me to staple it all together.  I explained I don't have a stapler, will have to take it somewhere to get it stapled.  Again, the face of a child and the "Do something about it", attitude was all I got from him.

So frustrating for me.  I sometimes want to scream, "Will this ever stop?"  This is all so crazy.

I had him put the papers away and I will put it all together for him this morning.  

When I was going down the hallway, Jack asked me what was going on.  I told him.  He put his head down and said, "This sucks, Mom."

Just another thing that we all take for granted on a daily basis, that too has been taken from husband.  He can't even do that anymore.  

I thought about it all night last night.  What's next?  Don't know, but, it'll probably be one that'll take me by surprise, for sure.  Thank God Jack is leaving.  He doesn't need to witness any more of this crap.  He's seen enough.

Jack's right.  This does suck.

A Family Gathering

Birthday dinner was fun.  I made BBQ chicken w/rice and made a pineapple upside down cake.  The food was delicious.

Husband was in good spirits.  Smiled a lot while looking around the room with everyone here.  He never got up, just sat in his chair and "visited".

It's neat how the kids react to him.  When he says something totally off the wall, or, adds his two cents into a conversation we had 40 minutes ago, they don't miss a beat.  They listen to him babble,  say things like, "I agree", or, "You know, you're right," kid of stuff.  Doesn't even faze them.  But, there is one thing they do.  After something like that, they always look at me as if to say, "Mom, fix him".  I wish I could.

Jack will be graduating from Basic Training in mid  November.  Being that he is going to San Antonio for basic, I would like to go to his graduation.  Sgt. V said it is a really big deal.  I would have to rent a car, (don't want to put those miles on my car), and get us a Hotel room for at least 4 days.  Don't know how I'm going to afford that, but, where there's a will, there's a way.  At least I will work all next week.  A little extra money there.

Taking husband on a trip like that may be hard on him.  But, he is wanting to go so badly.  He talks about it a lot.  Hey, at least he remembers that Jack will be graduating.  He never remembers the month, just the fact that he will graduate basic.

Time will tell.

Tyler told me that the drive-by I witnessed Saturday night did result in someone getting shot.  Tyler works for the City of Albuquerque, and was driving the bus close to us.  Seems some guy got on and told Tyler about the shooting, that some guy got shot in the arm.  Scary.  Can't wait to leave here hopefully, in June of 2013.

Weekend was good.  Husband has been OK.  Confusion and memory loss is there, all day, every day.  Can't ignore it anymore.

Jack leaves 3 weeks from tomorrow.

Gulp.

Saturday Night Special

Kristen offered to buy dinner last night.  I spent the day doing the heavy cleaning as I do every Saturday.  Laundry thrown in as well.

I am having a birthday dinner today for Kristen & Jack because their birthday's are close together.  I wanted the house to sparkle and shine.

We decided on Sonic.  I know, I know, fast food, but, it was close and well,  fast.  I left to go get dinner, Kristen stayed with husband.

Sonic is on a corner with a 4 way stop.  I pulled into the first stall and ordered our dinner.  I watched a woman walk up to the walk-up order.  She had 5 little kids with her.  She looked a little pooped out, pulling a wagon with the two smallest ones, and the three oldest walked with her.  She had two little boys, ages 2 and 3 in the wagon.  The older ones were girls, guessing their ages to be about 4, 6 & 7.  Once she ordered, all the kids sat down at one of the tables and were waiting for their food.

As they were right in front of me, I couldn't help but look at this cute little family.

 I saw a car driving very fast to the left of me.  Near the stop sign, going the opposite way of where I was sitting.  All of a sudden, a hand came out of the window, pointing at someone or some thing.  Then, I heard and saw gunshots.  Six of them.  It was like a slow motion movie.  I turned at this cute little family and saw the look of recognition on the mother's face.  She too knew it was gunshots.  I also saw the look of helplessness on her face, not knowing where these shots were being fired, in what direction.

As fast as it started, it ended.  The car peeled around the corner, and, as I watched this car, someone in my head told me to duck.  I didn't.  It sped down the street and vanished.

We were stunned.  I, (being one of the dumbest persons I know), got out of my car and looked down the street.  I could see 3 or 4 young teenagers standing in the middle of the street, waving down cars.  The mother of the kids got on her phone and called 911.

My food came, I told the girl what had happened, maybe they should not roller skate out to any cars until the police arrived.  Poor thing, her face turned white.

I didn't see anything, so, off I drove home.  As I was driving, I heard sirens, ambulance and fire rescue.  They flew by me.  No one was killed I read later.

When I got home, the first thing husband asked me was what took so long.

"Oh, just the usual Saturday evening crowd",  I responded.

Ah yes, my life.  Never a dull moment.

Reality Check-Up

We have not been to our usual Bible Study group on Friday nights for quite some time.  But, last night, I took husband because instead of Bible Study, it was a social gathering and pot luck.

We sat outside on D & J's patio while a storm gathered all around us.  The lightening and thunder, with a little bit of a breeze was so refreshing.  They have a beautiful backyard with garden lights and beautiful plants, along with a pool.  We haven't seen some of these people in months.

I don't usually take husband to these anymore.  By evening he is tired, (from sleeping all day) and is more confused than ever.  Last night was no different, but I took him anyway.

He didn't quite get it that there was a BBQ going on.  He didn't quite get it that it was a pot luck and I had brought a dish.  He didn't quite get it when D announced the burgers and hot dogs were ready.  He didn't get any of it.

As I sat there watching my husband, it reminded me of someone who would, say, crash a party.  This party crasher would act as if he knew exactly what was going on, smile, nod, mingle.  All the while not knowing anyone or anything.

Husband sat in his wheelchair, smiled, talked as best he could, nod his head when being talked to,  all the while not understanding just what was going on.  He never did get it.

I finally had had enough, announced husband was tired, it was time to go.  Actually, I couldn't stand anymore of his total lack of concentration, his looking around as if to say, "Where Am I?"

I wasn't being mean when I insisted we leave.  It was the reality of this disease.  It had been a long time since we were in such a large group.  It had been a long time for husband that is.  And I realized just how much damage has been done.  I couldn't take it anymore.  I had to get him out of there, to the safety of our home, where he could go back to sleep.

Or, was it me I was protecting?  Was it my fears in facing what is happening to him?  I mean, really, really, happening?

Guess I needed a reality check-up.

Milestones

It's official.  Jack is now 18.  We spent a quiet day yesterday.  Father in law came over to give him his card and $$'s.  That was so sweet of him.  Ever since we got the results of the Genetic Testing on husband,  he has been coming around so much more.  He really is such a sweet man.  When he looks at husband however, I can see his heart breaking and I feel so bad for him.

A good friend called me yesterday.  Her son left for the Army in June.  She had told me 2 weeks ago that he was having a hard time in Boot Camp.  Well, she was informed earlier this week that they were discharging her son and sending him home.  She still doesn't know why, they won't tell her.  Her son called her Wednesday and said he will be home today.  Nothing else.  She said that her and her husband were upset, worried and scared for him.  Her son is a lovely boy.  Raised beautifully.  He is their oldest, with three little sisters below him.

I reassured her that some just cannot make the military cut.  I advised her to tell her son that he is not a failure, he just was not cut out for military life.  Give him the support he needs.  Poor kid, I feel so badly for him.  At least he is coming back to a wonderful, loving family.

I told Jack about him, then asked him if he would give in while at Boot Camp.  He said no.  I know Jack will make the cut.  He has this burning desire to achieve a lot in life.

Alzheimer's disease continues to be the star of the show in our home.  Husband has not made any sudden declines, but, ever so slightly, is fading away.  It was quite noticeable yesterday.    Questions were asked of me throughout the day.  The same questions. Over and over. All the day long.  So, our little vacay has come to an end.

I knew it was coming.  By evening however, I was a little worn out.   It wasn't bad, mind you, but, the monster has made it's presence known.  Again.

My old boss called and asked me if I was excited to return there for a week.  I told her I was beyond excited.  She told me they were also excited to have me back, even if it's only for a week.  I jokingly asked her if I could wear my shorts, flip flops and tank tops to the office.  She is so funny.  There was a pause, then she said, "Uh, no.  You know the drill.  Dress up."  We had a good laugh over that.

She told me they trusted no one but me to fill in.  It's a lot of responsibility, mind you, but I so look forward to being there for a week.

No more late nights for me.  For a week, that is.

A milestone week.  I get to be in the corporate world for 5 days, my child turned 18 and, the ever present monster has once again decided to attack.

Two out of three "aint" so bad, eh?

Watching, waiting

Oh hum, the dog days of summer.  Keeps dragging along.  I just want this month to be over with, get to Sept 11th and have Jack gone.  Not in a bad way, mind you, I just want to get it over with.

Tomorrow my youngest child will turn 18.  I have no words for that.

Husband continues to be stabilized.  No sudden decline, no sudden anything.  And I wait for the next onslaught.

I think that's the hardest part.  The waiting.  I'm on Stand-by 24/7.

Got an email from my old boss.  Seems the girl who replaced me is going on vacation and she would like me to come in and run the office while the other girl is gone.  It's only for a week, but, I could use the extra money and being with the outside world might help my funk I've been in for so long.  Of course I accepted.  It's for the week of August 27th thru the 31st.  I am looking forward to that.

Jack will Dad sit for me.

School started here on Monday.  Was a strange feeling to not send a child back to school.  My life is changing, shifting.  I don't know if I like this change, yet, but, my time raising children is completed.  Now on to whatever will come.

Hard to post when my life consists of not much of anything.  I still have my thoughts, and during this stabilized period, I shall expose those thoughts here.

Something to look forward to (filling in at the office), something to dread, (Jack leaving), something to wait for, (the monster).

Stormy weather ahead!!

Decided to take the weekend off and try to act "normal".   Taking the weekend off from posting worked.  The latter?  Not so much.

Husband is still in the "stabilizing mode".  Nice for us.  Kinda like a lunch break before we go back at it.  While these breaks are a reprieve from this disease, I am always braced for what is to come.

It's a false sense of security.

Husband tole me yesterday morning that he had been praying for his mother, the two uncles that died from this disease, as well as his grandfather.  He did not know the uncles nor his grandfather, but wanted to pray for them anyway.  He was very emotional when he was telling me this.  I didn't ask him why he was praying for them.  Sometimes I just need to shut up and let him do the talking.

Adamant about going to church.  During the service, I looked at husband, and there he sat in his wheel chair, hands clasped together and his eyes closed.  He looked so very peaceful.  His face seemed to glow.

 All in all, a nice weekend.  A little relaxing as well.  I liked it.

Of course, the monster is still there.  It's always there.  Lurking around.  Doesn't hide.  Makes it's presence known, sometimes a little more subtle, sometimes not so subtle.

So, I wait.  Ready for the next round.  Bracing myself.  It could happen in the next hour, the next day, or, even the next month.

In this disease, you can't really relax during these cooling off periods.  Because I know what the devastating effects will be.  I hold my breath,  knowing what's coming.

There will be no warning, no dark clouds approaching, no nothing.  It hits like nothing you have ever experienced before.

For now, though, I take what I can get.

Let's "play pretend" (again)

And the beat goes on.  Not much to report on lately.

Husband has stabilized somewhat.  It's like that.  He will have a sudden decline (with this last one being the worst), then, stabilize for awhile.  The next decline is coming, trust me, I just don't know when it will hit.

I've said it before and I will continue to say it.  It's like a roller coaster ride.  You just never know when the bottom will be dropped out underneath you.

I had to take Kristen to pick up her prescription yesterday, and, when I got home, there was husband in the storage shed again.  When I got out of the car, I asked him what he was doing.  He was not using the walker and holding onto the shed doorknobs for dear life.  He looked like he was going to fall flat on his face.  He said he was "consolidating" his tools.  I had to chuckle at that one.

My first response was to say, "Well, let's consolidate right here.  Bring all the tools out, I'll put up a "Yard Sale" sign and let's sell, sell, sell".

If only.  Of course, he will not get rid of those tools.  What a waste.  His answer to me always is, "One day I will need them again."

Husband fell asleep earlier than normal last night.  I went to check on him.  He was having some awful tremors in his arms.  Especially the left one.  The arm was hanging off the bed, so, I carefully put it back on the bed.  It was twitching.  I didn't like that.

I am now in "waiting and watching" mode.  It's a game I've learned to play.  You play pretend everything is normal.  Until it happens again.  Once it happens, you re-group, gather your strength and make do with what you have left.

How fun.

Another random post

This endless summer, yet, it is going by fast.  The heat has bothered me a lot.  I try not to go out in the middle of the day.  Mornings this week have been cool and refreshing.  A hint of Fall?

Every Fall, it's harvest season here.  The chili roasters are arriving at the farmer's markets and grocery stores.  Here, in New Mexico, it's how you buy your chili's.  You buy a big canvas bag of chili's, then, take it outside where they roast it for you.  The smell will get to you every time.  Love that smell.  I don't buy it that way anymore, but, I still park by the roasters, just to smell that smell and think back to days gone by.

When I leave New Mexico next June, and Fall comes to wherever I'm going, I will miss the chili roasters.

Husband had a decent day yesterday.  Didn't sleep much.  Wanted to go to the storage shed.  He spent a good deal of time out there, looking at his tools.  Just looking.

I checked on him and he seemed agitated.  So, I left him alone with his tools.

I have started doing stained glass painting again.  It keeps me busy and I love to see the end results.

Been staying up way too late at night and getting up way too early in the mornings.  This mental fatigue is the worst.  I do get sleepy around 2 in the afternoon, but, by 6 PM, I'm ready to go for another 6 hours.  Bad, bad habit.

I gave Jack an early birthday present:   money.  His birthday is next week.  Tyler is off on Wednesdays, so he and Jack took off for the gym and mall.  Jack got a nice pair of Doc Marten boots.  The two brothers had a great day.

Hard to believe that my baby is turning 18 .  He has turned out to be such a wonderful boy.  Oh, how I love that child.

I am having a BBQ on the 19th in honor of Kristen and Jack's birthday.  Kristen's was the 27th of July.  It's combination birthday and going away for Jack.  I don't have many get together's anymore,  mainly because of husband.  He does not do well around a lot of people.  At least, not anymore. Gets very confused.  Plus, you cannot have a conversation with him, so, you feel as if you're ignoring him.

My life in a nutshell.  As of today.

Turning a page

First of all, thank you for the comments.  I take each and every one to heart.  After reading recent comments, I will take it to heart and look into Home Health Care for husband.

He does not take well to strangers.  He is very modest.  He still, somewhere deep inside of his brain, is a very prideful man.  Somewhere.  I can see glimpses of it on occasion.

When I move in with Tish & Jace next June, I am putting husband in a nursing home.  It would be too much for the grandchildren to witness him on a daily basis.  That I know.  However, for the time being, yes, I know it's time.

Sometimes, late at night, I get scared when I think of putting him in a nursing home.  Will they take good care of him?  Will they keep him clean?  Of course, I will be there every day.  That is a given.

As I was thinking last night, (oh, why do I think so late at night?  Better yet, why do I think at all?)  I imagined myself next year this time.  I will truly be without my husband.  What will I do?  I have been married for so long,  I won't know how to act.  I know I will not work again.  The very idea of going back to work and dealing with what I think now are such nonsense, I know that is out of the question.

This chapter of my life will be closing.  A whole new beginning for me.  I won't know until I turn the page to begin a new chapter.

Lately, I have been thinking about me.  For the last 2 1/2 years, I only thought of husband.  Now that we're heading towards the end, I have caught myself thinking of me.  I will be the one left here on earth.  I know where husband is going.  I'm not worried about him.  Suddenly, I will make decisions for me.  This will be my life from here on out.

This will be all new to me.  Raising 7 children, caring for them, having a husband, caring for him, has put me on the back burner for so long, why, what in the world will I do?

Honestly?  With all this heartache, the pain of losing my husband, the agony of watching him suffer, the financial strain it has put on me, the everything about this journey, I am looking forward to turning that page and begin a new chapter.

Update Alzheimer's

I've really been slacking in my posts lately.  Sorry.

Update on husband:

Continues to sleep most days and all night.  Dr said to cut some drugs in half to avoid the sleeping cycle.  Did no good.

When I first started reading and researching this disease 4 years ago, I, of course, went to the final stages first.  In the final stage, they do tend to sleep more and more.  The brain is shutting down, and cannot function on any sort of normal level anymore, so, it basically puts them to sleep.

Husband has a bedside lamp on his side of the bed.  I asked him Sunday night to turn the light off.  He looked at me and said, "I don't know how".

We had my homemade Posole Sunday for dinner.  It was delicious.  Husband said it was the best.  Later, I commented to him that that Posole was so good.  He said, "Oh, was it good?  Did you eat it?"

The legs are dragging now.  Attempt at any walking is labored, slow and painful to watch.

I got him a pair of slip on shoes.  Easier to put on for him.  He forgets how to tie his shoes.

Help him most days in getting dressed.

Forgets where his clothes are in his dresser and then tells me I need to do laundry as he has no clean clothes.

Does not know day of the week, date or time.  Asks throughout the day during wake periods.

Urge to urinate is most bothersome to him.  One of the other "Final Stage" signs.  Has accidents as well.

Slurs his words.  Hard to understand anymore.  Sounds like he's very, very drunk.

I woke up the other night to hear him talking to one of his "visitors".  Suddenly, while laying there, it dawned on me that when he talks to the "visitors", his speech is clear.  Strange?  God?  Angels?  You be the judge.

I think I've covered it all.  The decline last month was rapid and sudden.  Where he used to go into his own world but come out of it is no longer the case.

He's gone.  I am left with this shell of a husband that once was.  It's all gone now.

Jack leaves in 4 weeks.  He too will be gone.

Oh my.

The monster that lives in my house

Took a few days off.  I just needed to re-group.  Reality has become my middle name.  I don't know where I've been the last 2 1/2 years.

I accepted a deadly diagnosis, quit my job to be home with husband, dealt with top Neurologists at UNM,  understood what we were facing, met that head on, asked all the "right" questions and became Caregiver and Cheerleader.

Suddenly, it has really sunk in that husband is really going to die.  He's really going to leave this earth and join God.  It has brought me to my knees several times this week.

I suppose it's the delayed reaction?

I took husband out with me yesterday.  He could not understand what I was saying.  A lady sitting next to me asked, "Is he brain damaged?"  (By the way, she asked in a nice manner, apologized for asking but said she felt compelled to ask).  I told her he has Alzheimer's.  She was taken aback and said, "No!  How old is he?"  When I told her his age, her mouth dropped open, then, I saw tears in her eyes.  I explained it is a very rare form of Alzheimer's, striking them in early 40's, and moves very rapid.

She then told me she has been a Caregiver to Alzheimer's patients for several years.  She said she knew he had some type of brain disorder, but would've never guessed Alzheimer's.

As I got up to leave, she told me, "God Bless You, honey".

Later, it hit me.  He used to be able to hide it when we were out and about.  Now, he can no longer control it, the monster has done some serious damage.

Yes, reality of it all has hit me.

This is really happening.  It's no longer forgetful here and there.  The monster has come to live in my house, and, he's not going anywhere.

No, he's made it loud and clear he's here to stay.

A whole new world

For some reason, I went to my very first entry when I created this blog, 1 1/2 years ago.  My, time has flown.

In this first entry, I said husband had Familial Frontal Lobe Dementia and that he had about 1 year left.  All that was before we had genetics testing done earlier this year.  Then, the diagnosis shifted.

We got a new name and a new timeline.  It didn't change the fact that he will loose touch with reality, will not be able to walk anymore and will, in all likelihood, pass away within 1 yr to 18 months.

No, nothing changed, except the name.

You know, folks, I read so many blogs.  They are about a "normal" nuclear family.  Daddy goes to work, Mommy may work, and the kids are going through stages that Mommy shares on her blog.  Mommy complains that the kids may be out of control, sleepless nights, messy home, can't get anything done because kids keep her busy, husband needs to help more around the house, Mommy spent too much money on a shopping spree, projects around the house that need tending to, eating out at this "fantastic" restaurant, going on family vacations and how grateful that school will be starting soon.

I remember those days.

I often think how vulnerable we all are.  B bopping through life.  Oblivious that the unthinkable could happen.  That all of our "normal", daily life could be taken away from us, thrusting us into a new realm, where we still can't seem to catch our breath.

And now that my life, or, the life I knew, has taken a detour, I've had to completely change everything I ever knew and learn to live with statistics.  And, watch my husband die.

I have changed so much.  I was forced to take my rose colored glasses off.  I see things in a different perspective now.

With all the sadness that permeates my home nowadays, with all that comes with dealing with the devastating effects this has brought to our family, with all the adjustments I've had to make, I like the change in me.


I'm so different now.  I see the world and life in a whole new way now.  I don't stress about the little things anymore.

Could it be?  Have I actually grown up?

Failure

Husband got fitted for his new wheelchair yesterday.  It's a process, I'll tell ya.  We now may have to go back to Physical Therapy for an evaluation.  I'm hoping we don't have to do that, as, it takes a very long time to get in to see her.

The rest of the day was spent quietly.  Husband rested all day.  Didn't sleep. which is good, but, rested.

I'm still in somewhat of a funk.  I have my highs and lows.  I wake up each day with the promise of a new day, and go to bed with the realization of what my life has become.

Husband was restless all night long.  Neither one of us slept well or very much.  He went to the bathroom several times in the night.  I have placed a night light in our bathroom so he won't stumble on his way to the bathroom.  Every time he got up, I woke up and watched him hold onto the walls for support as he headed towards the bathroom.

I gave up around 6:45 AM and got up.

Husband has been wandering the house this morning.  He seems to be in somewhat of a stupor.  Seems very quiet.

The people from the Scooter Store left a brochure on the chair they fitted for him.  I was showing him the brochure later in the afternoon.  He acted like he was concentrating on what I was saying.  But, then I did the unthinkable.

I looked directly into his eyes.  There he sat, with those bug eyes staring blankly back at me.  I almost felt as if I were going to vomit.  I usually avoid looking into his eyes.  Only for some reason, I didn't yesterday.  I had to leave the room and get away from him.

I left the room and sat down on the couch.  Every time I closed my eyes, I could see his eyes staring at me.  Funny, I can handle the way he attempts to walk, his spastic movements and even the total memory loss.

But those eyes.

How am I ever going to get over this?   I think his eyes will haunt me til the day I die.  There is such a haunting, dead, coma like look to them now.  Big and bug eyed.

And this is where I think I fail him.