Husband's last camping trip

Husband's last camping trip

Monday, April 29, 2013

"Um, Good Morning?"

Living the apartment life is interesting.  With the weather getting warmer, more and more neighbors are venturing out and about.  There are some I'd like to be friends with for a long time.  Then, there are some who, when taking Snowball out to do his business, see us and think I need company.  I'll tell you about that one person in my next post.

For the most part, I like apartment living.  It's interesting.  I have a next door neighbor who is friendly, but, odd.  He is in his 60's.  He is very eccentric and everything you tell him, he has done that too, but, one better.  He has always been very nice to me and I love our conversations.  Trust me, if you want drama, he's the guy to go to.  Entertaining, to say the least.  He loves to go upstairs to the lady above me, and, together, they will sit on her porch and gossip. 

Now, the lady above me has lived here for over 30 years.  She is very sweet to me, always asking me how husband is doing.  Actually,  both of them ask me daily how husband is and did I get my rest.  Luckily, they have not yet gossiped about me.  I love to sit outside and listen to them. I giggle a lot when listening to them.

However, there is one lady who I  have spoken to who has not yet uttered one word to me, except to give me a glance or rather, a glare and walk by.  She does her laundry every Sunday morning, like clockwork.  She lives alone and talks to no one, except my eccentric neighbor, occasionally.  When I am sitting outside and she walks by, she will glance over at me, make a nasty face and continue on.  I have learned to not greet her "good morning", as it is a waste.

I asked my neighbor on the other side of me about this lady and M said that that is one of the nastiest person she has ever met.  She told me not to bother with her, she said that that woman is not nice to anyone.  

After M told me this, I now watch as this lady walks by.  And, I wonder.  How did she get so bitter?  What happened in her life to make her this way?  Or, was she always this way?  

Every Tuesday morning, she will walk across our little road to the duck pond.  There, she will stand and watch the ducks.  It's always Tuesday. 

With my life being what it is now,  when I see her, I think to myself, "Will I be like that 10 years from now?  Will I be so wrapped up in bitterness that I will offend friendly neighbors who just want to greet me?"

I'll be alone, like her.  I so hope I won't turn into someone like her. 

Every time I see her, I mutter under my breath, "No, Lord, don't let me be like her."  

Saturday, April 27, 2013

"Almost normal"

Well, this past week has been OK.  Foot is better.  Not all the way healed, I really did a number on it, but, better.  With all the bruising, the foot looks dirty, even toward the ball of my foot.  I put a shoe on yesterday for the first time in a week. 

Husband has been OK.  We have had sporadic moments where he has hallucinated, but, I have, so far, been able to talk him down.  I know I've said it before, but, it is real scary, those hallucinations.

As far as behavior and attitude, um, we have had our moments.   I have learned to go from OK, to sudden hallucinations, to, bad behavior.  As long as I keep bouncing, well, I think we'll be OK.

Father in law came on Thursday.  They had a nice visit.  When he was leaving, he said that he is taking husband for the whole day this coming week.  He said, "You need a break.  You can do whatever you need to do without him.  A whole day for you."  I could've kissed him.  Yay for me.  Even if I don't have anywhere to go, I'll find a place!

Jack has called a few times since he left for Germany.  He sounds so far away.  Oh, wait, he is.  He loves it there.  Says it so green, but, still cold.  He has gone to a few  cities surrounding the base.  The language barrier is not too bad, he says.  Guess I'll always have this piece of my heart that will miss him.

Today is house cleaning and laundry.  I haven't done laundry in two weeks, due to my foot injury last week.  So, it's a double duty today.  I hope no one else wants to do their heavy laundry like me today.  I need to take over the laundry room!

I like posting positive stuff.  Let's hope I can continue.  But, who are we kidding?  I know the other shoe will drop, just when I least expect it. 

I have learned to cherish the "almost normal" existence.  Because when the other shoe drops it's awful.  Scary, heartbreaking. 

So, here's to a rather positive week!

Wednesday, April 24, 2013

Picking up pieces

I am not the best when it comes to patience.  I have been working on it for about 2 yrs now.  I have gotten a lot better, but, still, I will be the first one to tell (or warn) you, I don't have a lot of patience.

Now, having a husband with Alzheimer's is definitely challenging.  Patience wise.  For me.

For instance, yesterday.

Husband wanted to go outside.  He has been having difficulty in remembering how to put on his shoes.  He doesn't know his left from his right anymore.  I have to help him.

Last week, in his frustration, he took out the shoe laces.  It was hard trying to fit the frayed ends back through the hole.  I did it, but, I told husband not to do that again.  He did it again yesterday.   Frustrated, I put them back together, all the while, telling husband "do not do that again!!"   Firmly.  Perhaps a little too firmly.  I think he got the message.  Or, I hoped he got the message.

Took him outside.  Sitting on our porch, he asked me to tie his one shoe.  He wanted  the laces tucked in his shoe like the other one.  I did.

My neighbor came to visit.  Within 5 minutes, husband asked me to fix his shoe.  Again.  He had untied the laces and said, "You didn't do it right".  Exasperated and frustrated, I tied his shoe lace, again, tucked it in his shoe (maybe a little rough) and warned him, "Look, this is making me angry.  Do not touch this shoe.  Again.  Do you understand me?  I mean it.  Enough!!"

I sat back down, so frustrated.  I looked over at my neighbor.  Oh, the look on her face.  Priceless.  We both started chuckling.

So, my patience level is low.  But, just when I think I'm going to lose it, I have to think of husband.  He cant help the way he is now.  He's sick.  Very sick.  Just to look in his eyes, brings me back to our stark reality.  He just can't  help it.  And, I have to keep my cool.

I suggested we take a nap in the afternoon.  He looked tired.  He fell asleep and so did I. I woke up about 1 1/2 hrs later to find husband gone.  I jumped out of bed and found the front door wide open.  There he was on the porch, mumbling to himself.  I asked him what he was doing.  He said, "I have to work on the grounds."  He didn't recognize me.  I got him back in the house.  Then he said he couldn't find the bathroom but he had to go.

Next time we take a nap, I will double bolt the lock.  That was unsettling.

My days are filled with challenges.  My husband tests my patience every single day.  I just can't blame him.  However, it's so easy to put the blame on him.

Most of the time, I can get through it without a scratch.  Other days, I want to beat my head against the wall.

Yes, it's hard, this Alzheimer's disease.  But, it's my life now.  Can't run away. 

Today is a new day.  I always have hope that this day will be a good one.  Sometimes, yeah, it's good.  Other times,  not so good.  Sometimes, I can laugh about the quirky things he does.  Other times, I want to hang my head down and cry.

I am not a Saint.  Far from it.  I just happen to have a husband who has been struck down in the prime of his life with this deadly disease. 

And I am left with picking up the pieces.

Tuesday, April 23, 2013

Forecast: One of Those days

Yesterday was an OK day.  Foot still sore, but I am able to walk fairly well.  Husband was OK.  Bummed that it wasn't his birthday.  I don't know where this has all come from, but, it's like he thinks I postponed his birthday. 

On the bright side, yes, he does remember his birthday.  Or rather, the date.  But, he kept thinking it was May 23.

He has been quiet lately.  But, he does pout a lot.  That gets me every time.  Actually, it makes me mad.  I try to ignore it, but, when I do, he acts up more.  So, I have to get firm with him, making me stressed out.  After I get firm, he seems to calm down, somewhat. 

I don't like getting angry with him.  I try not to show it.  So, when I say I get firm with him, I try very hard not to show my actual anger. 

Take for instance, just a little while ago.

I dress him every morning.  For some reason, he woke up earlier than  usual.  The minute he saw me getting on my laptop to post here, he decides he wants to get dressed, now!  I told him to wait about 10 minutes, then I would get him dressed.

He gets out his clothes.  He puts his shirt on (backwards).  He gets out a pair of shorts (might not be warm enough).  He can't seem to put on his shorts.  Sighs and groans, loud enough for me to hear him.   He's wanting my attention.  I ask him to wait a few more minutes.  He is having none of it.

Now, I have to put down the laptop and go get him dressed.  He's suddenly fine, no frustration on his part.  But, by now, I am frustrated.  He then gets apologetic, but, you and I know he's not really.  He got his way and that's all that matters.

My days are like that.  Most, but not all days.  If I sit outside visiting with some neighbors, he gets pouty, even though I have asked him to come out. 

There are days, and, then there are days.  Today looks like its going to be one of those days.

All because it's not his birthday.  And, somehow, its all my fault. 

Today, I want to run away.  I just don't want to deal with it.  Yes, it's going to be a long day.  I can tell. 

So, excuse me, won't you, as I need to go get my big girl pants.  Put them on, button them up and get ready for my day.

Monday, April 22, 2013

Welcome Back!!

While I was down with a badly sprained foot, Friday & Saturday, I forgot all about Alzheimer's.  I was in a lot of pain.  I was scared my foot was broken in places.  I just wanted it to get better.

The foot today, is better.  Still hurts to walk, but, nothing like Friday &n Saturday.  I'm on the road to recovery.

Yesterday morning I was so relieved that the foot was better.  Then, husband woke up.  And, it hit me.  "Oh yes, there he is, lost and confused," I thought.  I had been so involved in me, that, somehow, I didn't think about husband. 

Of course he was taken care of.  But, with my situation, well, I just didn't think about Alzheimer's.

Made me sad.  He came to me last night and said he was happy my foot was getting better.  Then he said, "I hope it's better for tomorrow".  I turned to him and asked him what was so special about tomorrow?  He looked at me with sad eyes and said, "Tomorrow is my birthday and with your foot, I guess we won't be doing anything, right?"

Suddenly, sadness swept over me.  It's not his birthday today.  It's next month.

I looked at him and said, "Honey, tomorrow is not your birthday.  Your birthday is next month."  His face fell and he looked so lost.  He took his walker and went to bed.  I sat out in the living room and wanted to cry.

So, welcome back to reality.  Welcome back Alzheimer's.   

Sunday, April 21, 2013

Powerful Prayers

Talk about power of prayer.

My Marie came to the apartment yesterday to help me out.  My foot was hurting, a lot.  I could put no weight on it.  She wanted to take me to the ER, but, knowing it was Saturday, and it was UNM Hospital, I didn't feel like spending 18 hours there.

She cleaned my apartment.  Picked up a prescription for husband and got more Epsom Salts for me.  I am very picky about cleaning and usually don't like the idea of someone else cleaning my house.  Not so yesterday.  A stranger could've cleaned it and I wouldn't of given a hoot.  She brought me a book.

She left in the early afternoon, said she would be back to fix our dinner.  She gave me strict instructions to not get up and told husband to rest on the bed.

I started reading the book she brought me and fell asleep in my chair.  When I woke up about 1 1/2 hours later, the pain in my foot was gone.  I looked at my foot and noticed some bruises appearing at the bottom of my toes.  But, the pain was gone.

I got up and could walk better.  Marie came, fixed us dinner and with each passing minute, it got easier and easier for me to walk.

This morning, as I got up, my foot felt sore, but no pain.  My muscles in my leg are very sore.  I'll take sore over pain any day.

I'm OK.  I didn't break any bones, I know that now.  Whew.

So, my fear came true, but, I made it through.  My children rallied around me.  Prayers were said for me.  And, God answered those prayers.

Going to take it easy today. 

Husband has not been in a good place since my fall.   I think this scared him too.  He looked so helpless.  I have reassured him this morning I am doing better. 

So, if you prayed,  I thank you for that. 

Ah, yes, the Power of Prayer.

Saturday, April 20, 2013

SLOW DOWN!!

Since husband was diagnosed, I have always had a fear that if anything happened to me, who would care for husband?

That fear became my reality yesterday morning.  I fell.  Hard.

We have had some freezing mornings.  Before this cold front, maintenance had turned on the sprinklers on our apartment grounds.  Well, the sprinklers came on, with some of the water getting on the ramp we have set up for husband.

To make a long story short, this water on the ramp froze and I slipped and fell.  My left leg went straight out, my right leg bent with me landing on the right leg.  My knee hurt yesterday and my right foot was hurting as well.

I stayed down as much as possible, soaking my foot in Epsom Salts, wrapping both knee and foot in ace bandages.

I was so afraid I would not be able to bend my knee when I woke up this morning.  I can happily report that my knee is much better today, however, my right foot is not.  I can barely walk.  It hurts.  

I'll see how it goes today.  Marie said she will come up and take care of the both of us.

Today is bath day.  I'll somehow manage to bathe husband.  Its also cleaning day.  Looks like Marie will be doing that.  Monday is laundry day.  I don't even want to think about that.

If it gets any worse, I'll go to the ER to get an x-ray.

After husband had gone to sleep, I sat out in the living room and thought, "Well, "it" happened.  Now, whatcha gonna do?"

My journey.  Oh, what a journey.  Maybe some day I can look back on this and have a good laugh.  Not today. 

Is God telling me to slow down, take it easy?

Hey, God, couldn't you just maybe whisper in my ear? 

Today will be spent foot elevated, praying for a good outcome.

Old Chinese proverb:  Never walk on frozen sprinkler water.

Thursday, April 18, 2013

A $70 Flashlight

Yesterday was calmer than the day before.  With "the man" gone, husband seemed much more relaxed.  However, when he went to the bathroom, he saw his reflection in the mirror and called for me to come in the bathroom.

When I went in, he had this haunting look on his face.  He asked me to look in the mirror and tell me what I saw.  I asked him what he saw.  He said he thought it was "the man".  My first thought was, "Oh no, no more." 

I gathered myself together and talked softly to him, telling him it was only his reflection.  I use the word "softly" to him because I have found that by talking this way, it has a soothing effect on him.  Anyway, he calmed down and took care of business.

The rest of his day was spent taking things out of the closet, looking at them, and putting it all back.  He would sit on the side of the bed, looking in the closet (remember the doors are gone) and start over.  Then he would take everything out of his nightstand, look it all over carefully, then, put it all back.  He would sit on the side of the bed, looking at the nightstand, as if admiring his job.

He would take a sip of water and go back in the closet.  He would take the same things out, look at objects and put it all back together again.

All. Day. Long.

I got him to take a break in the afternoon.  I made him lie down and try to rest.  That lasted for maybe an hour.  Next, he came in the living room and started "studying everything in the living room"  (his words).  He wanted to go through the drawers on our big TV stand.  He wanted to talk about everything that was in the drawers. 

Keeping my cool, I suggested he go watch some TV in the bedroom.  He went back to the bedroom where he started in the closet again.  This went on until around 9 PM. 

Hours and hours of doing the same thing over and over.  For me, it was maddening and exhausting all at the same time.

As I was getting him into bed he asked, "Will you help me find my little flashlight tomorrow?  It's the one I paid $70 for.  You remember, that little one?"  First of all, he never paid
$70 for any flashlight, but, of course, I said I would help him find it.

Today is bath day.  He is so relaxed in the tub.  If only I could keep him in the tub all day.

I think I know what my day will be like.  Helping him find a $70 flashlight.  One that doesn't exist. 

Oh well, at least I won't have to deal with "the man".

Yes?

Wednesday, April 17, 2013

Ding, dong, "the man" is gone!!

Where do I begin? 

I can honestly say, yesterday was one of the worst days I've ever had.  I hope I never have one of those days again. 

What I didn't put on here yesterday, was, I had gone to the office, again asking them to remove the mirrored closet doors.  I told them, again, that husband was having hallucinations and delusions in regards to the mirrors.  They called me a little later and said they could order regular closet doors for me, but, I had to pay for them.  I was stunned.  So, I asked them if they could send maintenance to just remove them, store them, so husband could have some peace of mind.  They told me no.

Father in law was here at that time and he saw how upset I was.  He said he would at least help me cover them up.  It was not sitting well with me.  I couldn't believe they  could not just remove those damn mirrored doors.  I almost went back down to the office.  To explain that this wasn't funny, husband is sick, very sick and I wanted to tell them off.  Yes, I was that upset.

After father in law left, I tried to calm down.  Husband was still agitated.  I had nothing to do but wait for the Dr to call me back.  I was fuming mad.  I didn't want to let husband know just how upset I was, it would only make it worse for him.

While I was giving him a pedicure, I began to relax.  It also helped calm husband.  There I was, sitting on the floor, husband in the recliner, eyes closed while I gave him a good scrubbing.  Trimmed his toenails.  It is hard to do that because his legs have constant spasms, including his feet.  I could feel a spasm come on, his legs would become stiff, his foot would turn up.  Each time that happened, I would softly say, "Relax, honey."  It worked.  Not only did it help him, it helped me.

Afterwards, he went into the bedroom and became paranoid again that someone was breaking into our home.  I sat with him, riding out this storm.  I spoke softly to him, finally convincing him to lie down and rest.

I went into the kitchen to make a rather strong espresso.  As I was doing so, I began to cry.  The sobs were awful.  I couldn't hold it in any longer.  There, in my kitchen, I began to pray.  I asked God to help me.  I have never felt such fear and loneliness.  I hope to never feel that again.

I checked on husband.  He was on the bed, resting.  I stepped outside on my porch to get some fresh air.  One of the maintenance guys happened by.  He asked me what was wrong,  I guess you could see it on my face.  I told him about how the office will not remove the mirrored closet doors. 

He is one of the sweetest guys.  He has met husband and talked with him.  Once I got through telling him what the office had told me, he said, "Well, I'll tell you what.  I get off at 5.  I'll go home, change clothes and come back here and remove the doors for you.  I can't believe they wouldn't do that for you.  No one has to know."

Well, there was my answered prayer.

Once the doors were taken away, there was a lightness in our bedroom.  Husband began to smile.  He ate a good dinner.  He watched TV.  He didn't talk to "the man."

Later, I asked him if he saw" the man", or, if "the man" was still here.  He looked up at me and smiled, then said, "He's gone".

So, "the man" in the closet is gone.  Of course, I know it was just his reflection he was seeing, but, to him it was real.

Just when I thought all was lost, God led me outside.  And, how funny, one of the maintenance guys happened by, only to save husband from torture.

Yes, God is real.  God answers prayers.




Tuesday, April 16, 2013

So it begins.............

A little late in posting.  My morning has been stressful.  Husband has not come out of this, whatever it is.  I called father in law this morning, had him come up.  He came and talked with husband.

Let me back up.  I ran to the store yesterday afternoon.  I was gone for 20-30 minutes.  When I got back home, husband was fit to be tied.  He told me he had "solved" our problem.  I didn't know we had a problem except for the obvious.  He proceeded to tell me someone had broken into our house and had robbed us.  He said we needed to get some nails and a hammer and  he wanted me to nail all our windows shut. 

It took me awhile to get him calmed down.  Last night was very uncomfortable for me, to say the least.  Of course, I talked him out of me nailing the windows shut.

This morning, as I was getting him into the bath, he began to cry, saying he was just so tired of all of this nonsense.  He once again explained that when we moved here, he said I told him it would be just him and I living here.  Now, he said, we have people coming in and out of our apartment and the "man", oh, he was just so tired of "the man".

The dread I felt and still feel inside is something I hope no one has to feel again.  Ever.  I gave him a nice bath, shave and afterwards, a pedicure.  In the meantime, I called father in law and he came up.  Husband had father in law lock our bedroom window.  That has helped his mind somewhat.

I have put in a call to the Dr.  Do I take him in to be evaluated?  Can I up his anti-psychotic med?  I am waiting for the Dr to return my call.

This is it, folks.  Father in law got me aside, and said, "This is going to be so hard.  This is the worst part of it all.  You are doing a good job.  You have to stay strong.  I'm here.  I'll be back tomorrow morning."

Oh God, can I really do this?  I sit here with tears and my heart is hurting so bad.  I glance at husband now, and there he is, paranoid and confused. 

Dear God, get me through this.

Monday, April 15, 2013

The simple way of Life

Yesterday was a tough one for me.  And for husband as well.

It all started off fine.  That is, until he decided to take stuff out of the closet.  Again. 

What happens is, he takes a lot of his stuff out of the closet, messes with it, then puts it all back.  Only now, he has developed a habit of taking stuff out of boxes or cases and putting them elsewhere, leaving empty cases and boxes on the bed or floor, then, will go into panic mode trying to remember where he put stuff.

I would go in and help him find his things.  Put it all back together again, only to have him take it all out, hide it, then panic and call me again.  I had had enough of this, so I went in, put it all together and told him very sternly, "That's enough.  I'm fixing dinner, I want you to sit on the bed and rest.  You've had a long day."  He said he would put it all away.

I checked on dinner and decided to check on husband.  As I was walking down the hall, there was husband, sitting in front of the closet, holding a screw driver.  He was talking to "the man",  I suppose and was asking him if he wanted the screw driver.  Then, he said, "OK, here you go.  Now, stay out of my stuff."  That was a little unnerving and unsettling.

Finally, finally, he put it all back and sat down on the side of the bed where he began to talk to "the man" again.  He was laughing, putting his hand to his mouth and really laughing.

Only, that wasn't so funny to me.  I said a silent prayer for husband to come out of it.  He did, somewhat, didn't eat much, but at least the stuff stayed in the closet for the rest of the night.

I sat outside and did some thinking.  Have to make a decision whether to place husband or not.  I believe it's getting to the point where I have to make some kind of decision.  I have heard that nursing homes have a rather long waiting list.  So, if I am to place him, I have to act now to get him on a waiting list.  But, I haven't made up my mind yet.  I need a little more time.

I am not ready for this kind of decision.  I don't know what to do.  I am at a loss this morning.  Sad and scared all at the same time. 

If only we could make decisions and know they were the right thing to do.  Oh, how simple life would be, yes?

 

Sunday, April 14, 2013

Begin the Paranoia

I spoke too soon.  Husband took a dive Friday evening.  He's been on a downward spiral since.  Not angry, not scared, just not "there".  His face even took on another look.  He didn't really look like, well, him.

I've noticed that when he goes into his own world, or has delusions, his face changes.  It's very strange.  I can tell now, when this is starting to happen.  Once I recognize it's starting, I go into "awareness mode," and prepare myself for anything.

Yesterday, he worked on our closet all day long.  I'm talking hours.  I could tell he was delusional, but, let him have his space, hoping he would come out of it.  You could hear him talking to "the man", sometimes he was frustrated with "the man", other times, he was having conversations with "him".

He called me in the bedroom.  Asked me to show him how to get in the closet.  I showed him by stepping into the closet, but, he was having none of it.  Wanted me to go deeper into the closet.  I explained that there was a wall there, so, we couldn't go any further into the closet.  He asked me what was on the other side of the wall.  I told him, "Jay & Michelle's apartment."   He looked at me so confused.  He just couldn't get it.

When I was in the closet, he said, "Oh, no, don't go there."  I asked "why".  He said, "He" sleeps there, you're stepping where "he" sleeps."

Later in the afternoon, I noticed husband laying on the floor, at the closet with something in his hand.  I went in the bedroom and there he was, unscrewing the doors on the closet.  He said he was trying to get into the closet and this was his only way of getting in.  I calmly told him to put the screws back in and "do not do that again".  Yes, I said it firmly.  I could just imagine the doors falling on him. 

He did as he was told, put all the screws back in and decided to do something else.  Oy.


After dinner, he came out and asked if he had been asleep all day.  I told him no, he didn't nap at all.  He said he thought he had been asleep.  Asked me if I had been talking to him all day.  I said yes, I had spoken to him throughout the day. As he was asking me this, he was trying to sit down on a chair that wasn't there.  When I told him there wasn't a chair there, he looked around confused and found his scooter chair to sit on. 

He then began to tell me that there were "people" in this house that were trying to steal all of his things.  I got cold chills. 

I read a few years back about how some Alzheimer's patients become paranoid.  I was praying this would not be the case with husband. 

But, God in all His Glory, has decided I need a little more action in my life, I guess.  God knows what He's doing.  Just wish He'd give me a little "heads up".  He should know me by now.  I don't like these little surprises.

And so it begins.


Friday, April 12, 2013

A time for me?

Thank you for those uplifting comments.  While I appreciate what others have to offer me in ways of comforting me, it's cuts to the core just the same.  Before diagnosis, well, I did the same thing to others who were losing or had lost a loved one.  I thought it would help them and ease their mourning.  Now that I get the opportunity (?) to watch as my husband dies, the things people say take on a whole different meaning. 

Husband is holding steady.  Not a significant decline.  Not like it's done over the course of 2  months.  There is still a "man" in our closet, people do come and go in our living room, but, no sudden scary hallucinations.  The hallucinations are still there, but, more subdued than before.  When he hallucinates, it does scare me, but, I've learned how to talk in a soft voice to him, rub his back, guide him to the bed, all the while, he does not know me, but, does let me guide him.

A year ago this time, the memory loss used to bother me.  A lot.  This year?  I'll take memory loss over those hallucinations and delusions any time.  Whew.  Those can be something, I'll tell ya.  To say they are scary is an understatement.  It shakes me to my core.

Yesterday, husband was doing his usual taking everything out of the closet only to put it back in the same place he took them out of.  As he did so, I heard him muttering.  I paused my TV and listened.  He said, "You know, you are really bugging me today.  Would you please get out of the way so I can put this stuff away?"  Oh, he was talking to "the man".  Now, mind you, what he said didn't sound like I just quoted, his speech is not like that anymore.  But, because I am with him 24/7, this is what I gathered he was saying. 

I went in and asked him what he was doing.  Of course, I knew what he was doing, but, I wanted him to tell me.  He said, "I'm looking for something and "he" is getting in my way.  Can you tell him to leave me alone?"  So, being the dutiful wife that I am, I said, "Man, leave him alone, he's busy." 
We both paused, then husband said, "Thanks, he's gone back in the closet."

I left the bedroom and had to chuckle to myself.  Yes, I talk to "the man". 

Husband loves his baths.  He asks me every morning it is bath day?  Once I get him into the tub, he relaxes in the hot water.  He sighs a lot and always says how good it feels.  I shave him while he is in the bath as well.  Trust me, I have had to learn how to shave him.  It used to take me some time, but now, I've got it down to a science.

When I get him out of the tub, I have his Listerine ready for him.  He rinses with that, then I have his toothbrush ready.  He has forgotten how to use the toothbrush, so I have to guide him during brushing.  One day, soon, too soon, I'll have to brush his teeth for him also.  Once that is done, I put deodorant on him, then, powder him down with baby powder.  He always smells so good after that.

Dressing a full grown man is no easy feat.  Especially with stiff legs.  But, I get it done.  After that, he is ready for breakfast.  And we start our day.

I don't know any other way of life now.  This is my life now.  What seems so abnormal and sad to some, is normal to me.  Sad?  Sure.  Normal?  Shouldn't have to be this way. 

So, a small glimpse of my life.  Every other morning that is.  One day, when he is gone, I shall miss those bath times.  Who will I bathe?  Who will I care for?  For the first time in many years, after raising 7 children and a husband I have an answer.

Me.

Thursday, April 11, 2013

Venting (Oh no, here we go)

OK.  Time for a little of what I call "Vent Session".  Grab a cup of coffee, settle in your favorite chair and read on.

There are many things I have learned in the last 3 years as I have walked this journey.  I have changed into someone I never knew existed.  I have become my own person.  I have grown up.

I also have met many people in this walk.  Some I hope never to meet again.  Some I would like to have in my life going forward.

I have watched my husband go from this big strong, hard working man into a shriveled up baby.  He is crippled up.  In mind and body.

Now, here is where the "Vent Session" comes into play.

When strangers, friends and yes, even family members tell me, "Well, at least he'll be in Heaven", lately, something inside of me seems to boil over.

I have been told this for the last 3 years.  And now, finally I am going to address this issue.

Why oh why do people think that by saying that, it somehow makes it all better?  Do they not understand that in order to get to Heaven, one has to suffer and die?  Leaving loved ones here on earth to be heartbroken?

No one knows what is it like to watch someone suffer, knowing the end result will be death.  That person will die, leaving a family who have loved him.  No one, that is, unless you have walked it.

Most of these "well meaning" people have never known such a loss.  They don't think when they speak.  I know, for I used to be among them.

Yes, I have learned so much.  Going forward, when I meet someone who is going through a loss, I will comfort them, do for them what I can, make them feel not so lonely.  I will never say to them, "Well, at least he/she is in Heaven".   Please understand, while we know they are in Heaven, we, selfishly, want them here, alive and healthy.

No, that won't make it all better for them.  It won't take away the pain of losing someone.  Frankly, it'll only make it worse.  Reminding someone of their lost loved one, gone forever? 

While I am a Christian and believe in Heaven, please don't remind me that that's where husband is going.  I will be without him, my life partner.  I will be alone.  My other half gone, forever.

Boy, this journey has taken some turns, I'll tell ya. 

Marching on........................................................................................................................................... 

Wednesday, April 10, 2013

Whos' in charge?

Not much to report for today.  Husband continues to be in his own world. 

I did, however take him with me to Social Security.  I needed a copy of his Award Letter for our insurance at UNM Hospital.  Good thing I did.  They wouldn't of given it to me if husband were not there. 

I have been named as his Power of Attorney a few years ago.  After diagnosis.  But, Social Security does not recognize any such outside Power of Attorney.  As the lady was preparing the award letter for me, she noticed husband and his nodding off and that haunting vacant look.  She asked me if I was his representative.  I explained about having power of attorney.  She leaned over and asked husband if she could make me his rep for the future.  Of course, he nodded, not knowing what she was saying.  She prepared the paperwork. 

As she was doing so, she asked me what was wrong with husband.  I said, "Late stage Alzheimer's."  Oh, the look on her face.  She kept apologizing, I kept saying it was OK.

Then came his signature.  He just could not sign it.  Finally, she said, "Honey, just have him put an X on the line."

So, I am now his rep with Social Security.  All decisions are to be made by me.  With everything now.  His benefits, his life and his death.  Whether they should keep him alive should it get to that point.  And where he is to be buried.  Everything.

All decisions.  Funny, I don't feel so powerful.  I don't like being in charge.  It's all on my shoulders now. 

Who would like to be in charge?  It's really not as fun as it sounds.

 

Tuesday, April 9, 2013

Sticky situations or how to diffuse a sitcky situation!

I kept telling everyone this nice weather wouldn't last.  Wind arrived yesterday, along with cooler temperatures.  It's now windy, cloudy and cold.  Again.  Some say snow is predicted.  Lovely. 

Father in law came for a visit.  He hovers over husband now.  We talked about Jack.  A lot.

After father in law left, husband began having trouble with the here and now.  He wanted me to find out how to get into the closet and under the bed.  I stepped into the closet and got on all fours to show him how to get under the bed.  He did not believe that I could do these things.   He was unsettled.  I suggested he lie down and take a little nap.  He was having none of it.

Then, he asked me why do I feed "him".  I tried to tell him that I do not feed "him".  He said that he sees "him" eating so he knows I'm somehow sneaking food to him.  Wanting to diffuse the situation, I hollered into thin air that I was not going to feed "him" anymore.  Husband got a kick out of that one.  We sat on the bed and chuckled.

He calmed down after that.  Wanted his TV on, I turned it on and left the room. 

As I walked into the kitchen, I was glad I got through that little spell.  I do not like this at all.  But, I have to play pretend it is all a game with him.  It's the only way to get out of a sticky situation.

There will be many more to come, I know that.  But, I've learned or am in the process of learning how to get out of a sticky, uncomfortable, scary situation.

Now, this is where my acting comes into play once again.  Hollywood, Hollywood, where for art thou?

Monday, April 8, 2013

20 Dogs?

Well, I did a post yesterday morning, and when I published it, it was all screwed up.  So, I deleted it and just didn't have it in me to start all over again.  Let's try this again.

My Saturday cleaning therapy worked.  My house was screaming, "I'm too clean."  My neighbor came to visit on our porch that afternoon.  I had husband outside, he was enjoying the beautiful weather.  I was joking that my house was so clean, I didn't want to go inside.  Afraid I would dirty it.  We laughed over that.  Don't get the wrong impression of me.  My house is always clean, but this Saturday?  Why, it was, CLEAN.

I did OK.  When I thought of Jack, there was a twinge, but, every time I got that feeling, I would find something to do.  The music helped.  I sang to the oldies. 

Husband has been pleasant.  Kudos to the drugs.  Not much in the here and now, but, pleasant.

I woke up around 3 am to find husband cross ways on the bed.  He had taken all the bed covers on his side and pulled them out.  He was halfway on the bed, with the rest of his body hanging over the side of the bed.  The dog was laying beside him, concerned over husband.  You could see it in his face.

I got up, asked him what he was doing, scared a little, thinking he was hallucinating again.  He was mumbling, out of it.  I fixed the bed covers, pulled him up and told him to lie back down against his pillows.  He said, "I can't.  I can't remember how to do that.  I'm glad you woke up because I've been laying here for about 20 dogs, hoping you would wake up and help me." 

Wait.  What?  20 dogs?  Yep, you heard right.  20 dogs.  Not 20 minutes, but, 20 dogs. 

Now, let me explain something.  When I quote husband, it sounds as if his speech is perfect.  I quote him as I understand him.  His speech is slurred, jumbled and a lot of mumbles.  But, this is what I understood him to say.

I got back into bed, he started mumbling and I thought, "No, Lord, please, not tonight.  Please, let him go back to sleep."  Within minutes, he was asleep. 

I don't like the hallucinations.  They scare me.  I mean, really scare me.  I feel like a child when it happens and want to run to my mommy.  Yeah, that scary.  When he hallucinates, he doesn't know who I am.  It's not tear your house apart, violent hallucinations, it's just that he sees people and things that are not really there, and when I go to comfort him, he will say, "Who are you?"

No, I don't like the hallucinations.

A comment was asked about if I have a good support system.  Well, yes and no.  The older children work with some only having 1 day off per week.  They all call on a regular basis.  Of course they ask if I need anything, or is there something they can do.  But, as far as care giving, no, I do it on my own.

That will all end next week.  I found out that Medicare will pay for a nurse to come to the home up to 3 days per week, for 3 hours each day, at no cost to me.  I am in the process of doing all the paperwork necessary for this to happen.  I will finally get a break from this madness.

Today begins a new week.  I survived Jack leaving.  I did it and did it well!  It's OK.  I'm OK.

Without me even falling to my knees, God came in and swooped me up in his arms and Said, "I'll carry you.  Rough seas ahead."

And that, my friends, is all I could ask for!

Saturday, April 6, 2013

A chapter closed yesterday.  My son is now on his way to Germany. 

We had such a wonderful time at father in law's house.  BBQ'd, laughed, told jokes, remembered old times and felt love from all around.  We took pictures.

Husband enjoyed himself.  He was smiling a lot.  Father in law noticed his eating and how sloppy he eats now.  Together, we helped him finish his meal. 

Father in law and I.  United by this monster that claimed the life of his wife, now, here we are, once again, going through it with husband.  We have a bond now, my father in law and I.  It'll never be broken.  Ever.

Father in law and I spoke about the "when it happens" thing.  He told me he would be there for me.  "Little Jack and I will take care of everything, don't worry."  He said.  As he said it, I looked at him and there in his eyes I could see that he knows now too, that husband is basically gone, and said, "There is nothing left of him, But, look at little Jack.  That's the future of our family.  That's the hope."

Yes, we have a bond now.

I was dreading the good bye stuff.  I'm not good a good bye's.  I let everyone say their final good bye's.  I wanted to be last so I could leave quickly.  As I held this man/child of mine, I cried.  Then, everyone around us cried.  Then, we laughed.  It isn't a sad time, it's a wonderful time for Jack.  It's just our hearts are breaking that he will never see his daddy again.  We all knew it, that's why we cried.  Of course, we will miss him.  I was teasing him and told him I would like an espresso set from Germany. 

Thus, a new chapter begins for me today.  I am feeling OK.  When I think about Jack, there is a twinge, but, I think more of excitement for him.  The beginning of his life.  His travels. 

Today I will turn on my TV to the music station.  I will listen to the Golden Oldies.  I will hear songs popular when I was a child.  I will remember.  I will clean house.  My heart will swell with pride when I dare think about Jack.  I may shed a few tears.  My house will sparkle and shine.  My husband will be in his own world.  I will pat him on the head, give him a kiss on his forehead.  I will bathe him, dress him.  I will sing to the oldies while doing so.

I'm in a good place today.  Funny how God works.  How He has comforted me in this dark hour.  When I thought I would crumble and fall, He has restored me.

It's OK.  It's really OK.

Friday, April 5, 2013

Therapy

Jack leaves tomorrow for Germany.  Early.  Tyler is taking him to the airport.  We are spending the day at father in law's house.  Our last family gathering. 

Bittersweet.

Jack took us out for a late lunch, early dinner yesterday.  As we were eating, Jack and I were talking about husband.  There he sat across from us, in complete oblivion, eating.  His food was falling from his hands, back onto his plate.  He would try to pick up his burger, only to have it fall apart.  I would put it back together for him.  He never noticed.

After doing this, I looked at Jack and said, "You know, honey, this is it.  When he goes, I hope you will come home."  "Of course, Mom.  I'll give you instructions on how to call the Red Cross." 

With that, we finished our meal.

There it is.  A conversation I thought would never happened, happened. 

My, he's grown into a fine young man. 

Husband continues in his own world.  Pleasant.  But just not there anymore.  I hope he is happy in his world.  I hope he feels love and is comfortable wherever he is at.

I did my laundry yesterday.  Saving house cleaning for tomorrow.  Going to scrub everything.  Even if it doesn't need cleaning, it's getting a good scrubbing. 

All the while thinking, "My husband is dying, my son is on a plane bound for Germany".

It'll be good for me, this scrubbing.  Therapy. 

Yes, that's what I'll do.

Thursday, April 4, 2013

A new day, a new dawn

I've had to take some time to reflect, to think, to plan, to make some kind of sense out of all of this nonsense.

Sunday, a day of rejoicing that our Savior had risen should of been filled with joy.  It was a very dark day in my house.

I took husband to his Dr appointment on Monday.  We had been there two months previous, and, here we were again.  Where in the past, we were going every six months, since December, this was our third trip to see the Dr.

Dr A was shocked at the sight of husband.  It was so obvious by the look on his face as he talked and examined husband.  When he was finished, he sat down, shook his head and began talking with me.  Husband was about 2 feet away from us. 

Once he sat down, I said, "Well?"  Shaking his head, he said, "He has entered the unknown world of
Alzheimer's.  Basically, he's gone, with a few small sparks of reality, he's gone."  I knew it,  I was right.  Why oh why do I have to be right?

Dr continues on, "By the look on your face, this has taken a toll on you.  There is nothing we can do for him anymore but up his medication, to keep him comfortable.  You have to start planning the rest of your life."

As he said this, he looked so sad.  I had never seen him this way.  He looked, well, human.

All the while we were talking, there sat husband, not 2 feet from us and he never heard a word, or, did not understand anything we were saying.  No reaction, no response.  Nothing.

I requested that we up his Zoloft.  Dr agreed.  We will keep him on the anti-psychotic as well.

Now, with the increase in his Zoloft, husband has been very pleasant.  It's doing it's job.  He is not in touch with reality much, but, pleasant just the same.  I'll take pleasant.  After last week, yes, pleasant please.

And me?  I have been very sad.  But, in this process, I am doing what the Dr ordered.  Planning the rest of my life.  I don't know what I'll do or where I'll go.  I'm thinking about it.  While I am sad, very sad, I feel something inside of me beginning.  Something that has been dormant for 3 years.

Reinvention of someone.  Me.

I've been on this journey far too long.  As Dr A said, it's now ending.  I am left with what I am left with.

Don't cry for us.  We've had a good life.  We've had our ups and downs, good times and bad.  But, we have always been together.  It's ok.  I have been holding my breath far too long, waiting for these words to be spoken.  Now it's out in the open.  Who knows how long he has?  Dr said 8 months, 12 tops.  OK, I understand, got it.

I am going to be OK.  I have my moments where I begin to panic, but, it goes away quickly. 

So, my friends, today is the beginning of the rest of my life.