Husband's last camping trip

Husband's last camping trip

Thursday, May 31, 2012

An "Ahhh" Day

Ahhh, I had a lovely day to myself yesterday.  I was about to leave for my errands when father in law called and wanted to spend the day with husband.  I offered to drop him off there.

Had a nice visit with father in law, gave him updates on husband, told him it has not been so good with husband.  He nodded his head, as we both looked at husband who was circling the patio in their back yard.  He looked at me and I realized what a connection we have now.  He said he would take care of husband, so, off  went.

Tyler picked up Jack, to spend the day with him, Kristen took off with her friend, which left me alone, with the dogs.

I got to have an "Ahhh" day.  So rare.  Guess God knew I needed it.  Several hours of silence.  No talking, no repeating, no nothing.  I felt my body begin to relax a little.  All too soon, everyone came home.

Husband was quite confused last night.  Said he didn't feel good.  He did not eat dinner.  Father in law said he was a little quiet, seemed like he "wasn't there" most of the time.  I told him he isn't "there" most of the time now.  I thanked him for caring for him and visiting with him.  He smiled but, looked so sad.  He went into Jack's room and spent some time with him.  Later, Jack told me, "Every time Grandpa comes here, he always slips me money."  He said that father in law tells him, "Here Jackie,  here's some money for you."  Jack and I had a chuckle over that.

I suppose we are entering Stage 6 of this disease.  There are 7 Stages, which I thought he was at 5 for quite some time.  I don't believe he's there anymore.  There are too many signs telling me otherwise.  No, I don't go by numbers, but, with Alzheimer's, there are stages.   It's like a chart.  I'm glad I have these numbers, it helps me to know where we are at.

We see Dr A in July.  I know he will see this rapid decline in husband as well.  I don't know what he will recommend, if anything, but, I am anxious to have him verify where we are at now.

I have heard nothing on his EEG.  Don't know if that's good or not.  Seizure activity at night seems to have subsided.  Tremors during the day remain.  It's pitiful seeing his body wracked with tremors.

Wives, cherish your life partners.  I used to complain like everyone else about my husband.  I always wanted him to change and be different from other husbands.

Well, I got my wish.  Or, did I?  He changed, all right.  He is different now for sure.  He can't walk, can't talk right and can't think for himself anymore.

Accept your husband for what he is in the here and now.  You just never know when the rug will be pulled out from underneath you.

Love them as they are.

Wednesday, May 30, 2012

A New World

My "friend" at Bible Study has really done a complete turn around.  I honestly think she realizes how she treated me and is trying to make up for it.  I certainly hope it continues.  Lord knows, I don't need anymore crap in my life right now.

Because of vacations, Bible Study will pick up again on the 19th of June.  I'll miss going until then.

Husband is still in his own world with a few glimpses of reality, then, with the blink of an eye,  he retreats into his own world.  A world that really doesn't exist.

It's taken me a few days to adjust to this sudden decline.  I am doing OK today, but, it's early in the morning.  Who knows what today will bring.

I have a few errands to run this morning.  I asked husband if he'd like to come along.  I'd rather not take him, but, he has to get out of the house too.  Might do him some good.

There are days that I feel so alone and isolated.  And that's with people all around me.

Nothing is going to take any of this away.  Nothing.  Maybe that's why I feel the way I do.  There is nothing they can do.  I watch as my husband slips away into the unknown world of Alzheimer's.

I'll be OK, just need to get used to this sudden change in husband.  Takes a few days.  Soon, the sadness and fear goes away.  Reminds me of flying and hitting turbulence.  Once you get higher up, seems to even out.  Until the next bout of turbulence hits.

The only difference is, you eventually land.



Tuesday, May 29, 2012

Holiday Weekend?

I had to stop myself all weekend to remember it was a holiday weekend.  Didn't feel any different to me.  Because of husband's inability to walk and his inability to think anymore, we don't go many places.  And, it got to me this weekend.  That, and his sudden decline into madness.  Actually, everything got to me this weekend.

Mostly, the unfairness of it all.

Because of husband's mental condition now, I think it's scaring the dogs.  They have been clinging to me for days on end.  Where ever I go, they go.  I would sit on the couch, close my eyes for a second, open them, and, there they both were.  Staring at me.  They follow me every where.

Jack has been so upset by husband's total breakdown.  I talked to him, told him to understand that his dad is gone, it's not him anymore.  He said he understood, but, you could see the hurt and frustration on his face.  Told him I loved him, he said he loved me too.  He has been staying close to me as well.

I'm scared.  I have to go through this.  I have no place to hide.  My life has become one of hell and madness.  And, it's on my shoulders to make sure everyone is happy and cared for.

But, it got to me last night.  I sat on the couch and cried.  Of course, the dogs were right there.  I felt as if I might suffocate.  It all hit me at once.  "Leave me alone",  I said to the dogs.  The hurt look in their eyes made me cry more.

I want to run away.

They say after a good cry you feel better.  Get it out, "they" say.  "They" should put in a disclaimer.  Unless your husband is suffering with Early Onset Alzheimer's that is.  Unless.

I got up this morning to find husband getting dressed.  Once he was dressed, he got back into bed and fell asleep.  He has his shoes on as well.

Today, I want it all to go away.


Monday, May 28, 2012

Rattled and beyond

The past few days have been rough.   I mean, rough.  Husband has been very difficult, going in and out of reality.

I always use the term "rattled" when describing a rough situation.  Often, some people have been heard chuckling when I use the word, rattled.  Well, I am here to tell you it's no laughing matter.

When I get rattled, it feels like my whole body is shaking and vibrating at the same time.  I feel as if I am on the verge of completely losing my mind.  It's a very uncomfortable feeling.  Scary too.

Pat & Jason came to help lay the bricks yesterday, helping Jack out.  It's a job, but, once they got it all figured out, the process went smoothly.  Almost done, they will finish up today.

I had told husband to stay in the house so they could work.  Yeah, sure.  Of course he was right in the middle of everything, with his walker.  He finally came in, but not without a fight.  And he was angry at me for making him come into the house.

Poor Jack.  He had a rough time with his dad.  He told me later that he wished it was September so he could leave.  I can't blame him.  Poor kid, even he was rattled.

Husband got it up in his head that Friday was Father's Day.  Asked me why did I not do anything for him on Father's Day.  Putting on my Academy Award Winning Face, I told him it was not Father's Day.  He insisted that I told him it was.

During the BBQ Saturday, Susie & Christine both came to me very concerned.  Said that they had no idea how bad husband has become.  Both of them were visibly upset about husband's deteriorating condition.

We see Dr A in July.  6 more weeks.  I will request a nurse to start coming in.  I will do that for as long as I can.  And then?

I will place him in a facility where they can care for him.

So final.  So hard.  So sad.  

Saturday, May 26, 2012

The Case of the Missing Sand!!

Every time husband goes downhill a bit it takes me by surprise.  I don't know why.  Maybe it's because of the extreme way he does things now or, just the sheer audacity of this monster.

I have been wanting to lay bricks at the end of our patio.  There is a small patch of dirt that was never finished. So, landlord said he'd take it off the rent if I would buy the bricks.  Off to Home Depot  I went.  Of course, husband had to go.  Oy.

Once I found the cheap bricks, I started loading them on the cart.  I only needed 50 of them,  so, it wasn't that hard.  Husband insisted on helping.  Once I was done, one of the workers came to assist me.  We started talking about me taking 25 in my car and coming back for the other half.  When he was loading the bricks, we decided that all 50 of them would be fine in the car (I have a Santa Fe, SUV) being that I only lived a few blocks away.

Once we got home, Jack & Kristen unloaded the bricks.  I heard husband talking to Jack.  Jack had a funny look on his face.  I came up to them and Jack said, "Mom?"  "What?", I said.  "Dad says you have to go back and get 100 more?"  "Whaat?"  That's when husband says that I told him I had to go back to get another 100 of those bricks.  Where he got that, I'll never know.

During the afternoon, he would occasionally ask me when I was going back for a 100 more bricks.  Each and every time I would explain, again, that we did not need any more bricks.  Exasperating!  Exhausting!

He took a bad fall Thursday night.  Outside.  Against a planter we have out back.  He insisted on turning that small patch of dirt at the end of our patio, prepping for the bricks.  I told him not to do that, Jack will do it.  He fell, hard.

I found him back at that patch of dirt yesterday afternoon.  I asked him what he was doing.  Said he wanted to get an idea of how to lay the bricks.  I also bought a bag of sand, to help settle the bricks.  I found the bag half full last night.  I don't have any idea what husband did with half a bag.  I looked at the small patch of dirt, no sand there.  I have no clue where or what he did with it.  Have to buy another bag of sand.

This time, however, I'm going to hide it from husband.  Who knows where it'll end up if I don't.

Last night, after everyone had gone to bed, I had to have a good laugh with myself.  My day was so stressful with husband yesterday.  He had me rattled all day long.  Thought again of the missing half bag of sand.  I couldn't help it, I started to laugh.

Oh, this is something I would not wish on anyone.  One day, I may be in a position to help another who is going through what I'm going through.  I hope so.  I have so much to offer.

We all have our crosses to bear.  It's how we bear them that counts.  We can fold up.  We can give up.  We have a choice.  My choice is to laugh.

It beats the alternative.

 


Thursday, May 24, 2012

Sighs of relief

I was just reading our local news here online.  Just as I got ready to click over to to here, I caught a small caption.  It said:

"9 Ways to tell if you are depressed."

You need to give me 9 reasons?  Why, I'll give you 1.  That'll do ya.

Husband's birthday was as I expected.  I practically tiptoed around all day.  He was not in a good place.  Because we are having his birthday BBQ on Saturday, I let him make the choice of having his birthday cake now or Saturday.  He said it didn't matter.  I'll make the cake Saturday.

When I got up this morning, I breathed a sigh of relief.  Birthday, over.  Made it through.

Husband did not say much during the day.  Of course, the kids called, with Tyler calling twice.  Every time I would bring him the phone, I would have to tell him how to use it.  (He doesn't know how to use the phone anymore.  Forgot).  He would want to push the "Talk" button.  I had to tell him each time, just speak.  I heard him chuckling at times.

I even got the dogs involved.  Every time I sang "Happy Birthday", the dogs would get a little hysterical.  The little one would spin in circles and the big one would start panting.  I know they were just being in a celebratory mood, had nothing to do with my singing abilities.  No sir!!

Husband talked about his mom during the day.  I listened while he talked about her.  He said he wished she was still alive.  I agreed with him.  Told me how strong and independent she was.  Talked about his childhood, his grandmother.  How strong she was.  I do remember her.

When her husband passed from this horrific disease, he left her with 12 (yes, you heard me right, TWELVE) children.  Her youngest was 10 yrs old.  Husband's mother.

All in all, it wasn't a great day, but, it wasn't a bad day.  There were sad parts, but to hear husband chuckle while on the phone was nice.

We came to the dreaded day.  We got through it.  I can't stop time.  I can only make it through one day at a time.  I don't know what today will bring.  I only know what yesterday was.

On a scale of 1 - 10, with 10 being the best, I'd say yesterday was a 5.




Wednesday, May 23, 2012

Countdown

Well, bible Study went swimmingly.  My "friend" did a 160 on me and was very charming.  Jackie had called me earlier in the day to apologize that she did not speak to E about her negative attitude towards me.  We agreed to let it be for now, however, J said she is now aware of it and will pay more attention to her.

I enjoyed myself.  But, God has a way of taking control.  This chapter we were studying was about "Holding your tongue".  When she was leaving, she gave me a hug.  Perhaps she realized what she had said last week, realized how it affected me?  Don't know.  Let's hope next week she doesn't flip again.  I'll take it for what it is, only, I sure was looking forward to handing her my shoes!!

Today is THE day.  Today my husband turns 47.  I have mixed emotions about this birthday.  I looked at him sleeping when I got up.  His facial features have changed somewhat.  He has developed a new thing.  When he sleeps, his eyes squint.  They eyes are not just closed, they are squeezed shut.  Bothers me.

He doesn't remember what this birthday means.  He doesn't realize that with his family history, in all probability, he will not live to see 48.  It's there, folks.  History is repeating itself once again.

In April of 2010, on Diagnosis Day, they told me 3 years tops.  That was 2 years ago.  Do the math.

Now, today, we are at that dreaded, crucial 47th year.

I will treat him like a king.  We will be "happy" it's daddy's birthday.  I will smile, laugh and joke with him.  He, oblivious to statistics, will love all the attention.

As I start this day, my heart is not in anyway happy.  It's broken.  But, "the show must go on", as they say.  He will be awake soon.

Time for "curtain call".

Tuesday, May 22, 2012

Take these shoes. Please!!

So, today I go to Bible Study.  Maybe my "favorite" person will not attend?  Don't think so.  She is always the first one to arrive.  There she sits, so regal, in "her" spot.  I am not going to let her get to me like she did last week.  I am going to take the advice of one of you and if she speaks out negative towards me, I shall take off my shoes and offer them to her, with me (smiling) and saying, "Here, walk in these shoes."

Today will be my test to see how well I stand up against her.  Who knows, she may apologize?  Stranger things have happened.

Husband has been very confused for the last several days.  I lost count on how many times he asked me yesterday what day it was.

He was looking at the calendar in the kitchen as I was sorting laundry in the laundry room yesterday.   He came into the laundry room and pointed to the calendar.  Then he said, "Did you see the date thing?"  I knew he meant calendar, so I nodded my head.  He then asked me what day it was (again).  I told him.  He goes back to the calendar, looks again, then, comes back to me and says, "Wednesday is my birthday."  "yes, I know," I say with a fake smile.  He looks proud.

Patrick & Christine want to have a BBQ here on Saturday.  They said they would provide the food.  Told husband.  He got very excited.   Why, or why do I do that?  Now, all this week he will ask me what day it is, is it time for his BBQ?

This sander he was talking about has not been brought up again.  Told you he'd forget.

This year, I am not looking forward to his birthday.  We all know why.  It's usually filled with family, food and laughter.  Patrick says he wants to make this, what will in all probability be his last, a festive one.  While he said it, he started to choke up.  OK, OK, I said, we'll do it.

I just don't have it in my heart.  It's just not there.  But, I'll do anything to make him smile.

Except, I still won't buy him that sander!!

Monday, May 21, 2012

"False Hope"

The message at church yesterday was about listening to what God wants you to do.  I've heard that before, but, it sunk in, finally.

I thought about it all day Sunday.  Last night, even.

I am searching my heart and soul to learn how to do that.

When do we know when it's right?

In my Bible Study group, we have just talked about "false hope".  Having been through a "false hope", recently, I can surely relate.

As you all know, I put off looking for a job.  Gave it up, in fact.  I believed God was telling me my job is to be at home with husband.

So, last month, I got a call from a Mortgage Co, telling me they were interested in me.  I did not want to go in for an interview.  Hesitated.  Finally, I agreed to see them the following Friday.

Thursday night, I caught that nasty virus that had been going around.  By Friday morning, I had fever.  I cancelled my interview.  Asked God that if it was meant to be, then they would insist I come in when I was well.

They did.  I scheduled for the following Monday.  By this time, I was hopeful, praying and thanking God for my "answered prayer".

I sailed through the interview.  Felt comfortable and was so excited and happy at the thought of working there.

Arranged with Kristen to work only nights so she could be home with husband.  Father in law said he would come twice per week to take husband.

I have never heard from this company since.

Listening to what God wants or, was it all "false hope?"  Or both?

It's hard, doing what God wants us to do, to glorify Him.  How do we "know" when it's right?  I have yet to learn that one.

Now, I'm confused.  When I make a decision in regards to husband, when will I know it's the right one?  Take for instance, placing husband in a nursing home.  Is it right, or, is it wrong?

Food for thought.  Hope I didn't confuse anyone.  But, boy I sure am confused!!

Sunday, May 20, 2012

On a lighter note

I took Kristen to her class in the early morning yesterday.  On my way home, I decided to bring myself out of this rut I've gotten into.  By the time I got home, I was feeling better, looking forward to a new day.

Hadn't stepped two feet inside the door when husband hollered, "I have to have my medicine.  Did you give me my medicine?  I need it.  I can't remember if you gave it to me or not.  Did you?"  Ever see a movie where there is music playing softly when suddenly, the music comes to a screeching halt?  Yeah, it was like that.

Once I reassured husband he always had his meds after breakfast, I then had to reassure him that no, he had not had breakfast yet.  And so, my day began.

Husband announced last night that he wants a new sander for his birthday.  First of all, he can't remember where he is half the time, but knows his birthday is this week.  Second of all, he explained in great detail how great this sander is, how unique it is, how expensive it is.  Third?  I cannot afford to buy him this wonderful sander.

Also, he will never use it. Oh, he'll take it out of the box, admire it, and tell everyone about his new sander, but use it?  Never. Total waste of money.  However, I cannot tell him that.  So, I did  what I do best. Agreed with him, promised I would take him to Lowe's or Home Depot to look for one.  This is where Alzheimer's may help me out when I'm in a pickle.  He may forget about it today.

Now, I would rather lay on a hot driveway, stark naked, (gasp), than take husband to Lowe's or Home Depot.

I forgot to buy fish food.  Husband wanted to give them dog food last night.  Another thing on my to do list? Make sure I get fish food today and monitor the blasted dog food.

Yeepp........................................................................................................

















Saturday, May 19, 2012

Tough week

My life as I know it now can be overwhelming and suffocating.  There isn't a day that goes by that I'm not reminded of how awful this disease really is.  What it has done to husband, to me and to our family.  I truly never understood what it meant when others would say that they were victims too.  Until now.

Alzheimer's sucks.  Yes, you heard me.  It sucks.  I hate to use that word.  I think it's vulgar.  I also think Alzheimer's is vulgar.

I've had a rough week.  It all started out innocent enough.  Until Tuesday, when I went to Bible Study.  It was all downhill from there.  Thursday I had to go in for my regular Mammogram.  I am petrified they will find something.  Why?  My Dr said everything looked fine.  Why am I so scared now?  I pray everything comes out OK.  Can't let anything happen to me.  Please Lord, let everything come out OK.

I have felt so vulnerable this week.  If anything happens to me, who will care for husband?  I think this all started with Bible Study and I have let it effect everything else this week.

Pray for me.

Thank you for the comments regarding Bible Study.  I am going to take your advice and go back on Tuesday.  If she continues to be negative towards me, I will put her in her place as carefully as I can.  I'm not someone who will back down, but, lately, I have been feeling like the fight has gone out of me.

No one knows what it's like to walk this journey, unless you've walked it yourself.  My friend J walked it.  Her mother had Alzheimer's.  She told me her mother treated her something awful.  She finally had to put her in a nursing home.  Her dad did all he could, but was not able to handle it alone.  I love her dad.  He lives with them now.  Her mom has been gone for several years now.  We share a common bond.

Also, husband's birthday is this coming week.  He will reach the same age as his mother, uncles and grandfather all did and passed away.  No one lived past 47.  I want to make it festive for him.  He told me last year that that would be his last birthday.  Well, here we are, he made it.  Only, I know what the statistics are now that we are entering into the dreaded 47th year.

I've had enough this week.  Too much.  Tomorrow I hope to post an uplifting, funny post.  Today?  No, not today.

Wednesday, May 16, 2012

A Negative Nellie!

Life continues on.  Not much to report on.  Husband is OK, in and out of reality, but, OK, for now.

As I mentioned before, I hadn't gone to my regular Bible Study on Tuesday due to Jack taking the car to school.  But, now that he is out, I have attended for the last two weeks.  I did not mention that there is one woman who goes that is a very negative person.  How can I explain it?  Well, here goes.

She does not attend our church, but, I applaud her for attending this Bible Study every single week.  She is faithful to her lessons.  But, (yes, this is where the but comes in) she argues with everything I say, telling me I need to do this, or, I need to do that, or, how mean I am being to husband, saying she would never do this or that, all the while, asking the other ladies if they would handle a situation the way I did, making it sound as if I am just a mean person.   She makes me uncomfortable.  I can't help it, the woman makes me uncomfortable.

Yesterday, however, she crossed the line.  Without going into detail, she made me feel like a heel, belittled me in front of the other ladies and judged me.  I felt so exposed.  I kept on, but had to practically sit on my face to keep me from saying anything.  After the group had left, I stayed on and had to speak to J about this situation.

J agreed with me, said she was out of line, and said she would have a talk with her about her attitude toward me.  I finally told J that she has made me uncomfortable since day one.  I mentioned several things she has said to me since I began going.  I had to let it out.

This woman does not know me, but, continues to judge me on everything.  She doesn't have, nor ever had, a terminally ill husband.  She has never dealt with any loved one pertaining to Alzheimer's.  She does not walk in my shoes.  She does not know anything about Alzheimer's.

I will attend next week, and, if she continues to degrade me in front of others, I will drop this Bible Study.  I have enough negative in my life, dealing with husband and his illness.  I don't need to expose myself to more.

We both deserve to attend bible Study, but, I also want to feel comfortable in going.  At this point, I don't feel as if I should continue.

Am I wrong?

Monday, May 14, 2012

Recap of Mother's Day 2012

Actually, Mother's Day 2012 was very nice for me.  I shall cherish the memories!

We went to church, of course.  Pastor had all the mother's stand and there was a thunderous applause for all of us.  As we sat down, I noticed a young couple.  The man was holding a very new baby.  You could tell it was their first and a little girl.  She was covered in pink.

I would glance at them throughout the service, how proud they looked with that baby girl.  I noticed often, the father would look down at his child and the look of pride on his face was priceless!  At then end of the service, I noticed this young mother yawn.  I chuckled to myself and thought, "Oh, honey you're going to be doing a lot of that for a very long time."

Memories of my own experience with a few (OK, 7) babies took me back.  I remember so well that feeling.  Didn't matter if it was the first baby to the last, the feeling I had is something you just cannot explain.  That warm feeling followed me the rest of the day.  Thank you, God, for letting me experience that again.

I bought some beautiful roses and off to the cemetery we went.  For my mother in law.  She deserved to be remembered as well.  As I stood there, I silently "talked" with her.  I felt a presence, as if she were right there.  I told her, in my mind, that her child has the same disease that took her life.  I believe she knows already.  It was a feeling I got, deep within my soul.  She does know.  I asked her to watch out for him, please.

The rest of the day was spent quietly at home.  Kristen cooked dinner and made a cake.  Pat & Christine stopped by with a gift for me.  It was supplies I needed for my stained glass painting projects.  How thoughtful of them.   Calls throughout the day from each child of mine.

Nice day.

I have completed only 1 stained glass project so far.  Jack is making frames for them today.  We have a lot of scrap wood we were using for the fireplace and they will make beautiful frames.  We tried one out yesterday.  Really looks great.  All I have to do is lightly sand and put a very light stain on the wood.  I am excited how well this is going.  Can't wait for the Arts & Craft Sale.  Just need to get the rest done.

If I had to grade Mother's Day 2012, I'd say it was an A+.

Thank you God, for a lovely day.  Funny how He knows just what you need at the right time, right place.


Sunday, May 13, 2012

Mother's Day 2012

First of all, Happy Mother's Day to all of those Mommy's.  I don't know how my day will be spent because my life is always a question nowadays.  One never knows in this house.  It could be wonderful or, like yesterday, it could be not so great.

I had taken husband to Lowe's so he could look at gloves.  If he is to use the manual wheelchair, he will need gloves to protect his hands.  Friday, at the zoo, he developed blisters on his hands.  I told him we would get him a cheap pair, as we don't use that wheelchair often.  Only when we go places that require a lot of walking.

I was looking at something when I discovered husband gone.  I walked that store twice.  One of the workers asked me if he could help me find something.  I told him Yes, my husband.  He chuckled and said that happens often.  I said no, sir, my husband has Alzheimer's, wanders off and gets lost.  He got serious and said, "Well, let's go find him."  I described him and within a few minutes, this man was at the end of the store, waving his hands above his head.  He had found him.  I couldn't thank him enough.

There was husband, sitting on the floor of the store, looking at gloves.  He was in his own world.  I looked at the gloves, noticed they were awfully expensive and told him so.  I said we were going for cheap gloves as he doesn't need  all that fancy schmancy stuff.  Husband became angry, started throwing a fit in the store.  I couldn't get him out fast enough.

He was furious the rest of the day with me.  Too bad.  

So, you see, my Mother's Day will probably not be a day filled with warm, sweet memories.  It will be just another day as far as I'm concerned.  I will call my mother and honor her on this day.  My kids will try to make my day special, I know that, but, we always have this shadow following us.  There is always a dark cloud in this house.

And I'm OK with it.  It is what it is.  I know my children love me.  I know I love my mother.  I had a husband who used to love me, but, he has slipped into his own world now.  So, I will cherish  Mother's Day past, look forward to the calls from the kids, and be thankful for the memories.


Saturday, May 12, 2012

May I introduce you to a broken woman?

I took husband to the zoo yesterday.  He had to use the manual wheelchair as I cannot transport the motorized chair because I don't have a lift for the car.  Why do all zoos have so many steep hills?  He wheeled himself on flat land, but, pushing him uphill and downhill took a lot of effort on my part.  My whole body hurt last night.  That was too hard.  Have to see how much lifts cost so I don't have to do this again.

The weather was great, the animals were on their best behavior.  There were also so many schools on field trips.  When we pulled up, I counted 20 school buses.  The zoo was filled with elementary school kids.  We had a nice time though.

We have started going to our Friday night bible study again.  This group is uplifting to me.  I have missed them. The reason we stopped before was by the time our meeting ended, it was dark and husband would become disorientated driving home.  Now that it's still pretty much light outside, he does fine.

We have a new couple in this group.  The wife works, the husband does not.  Cannot find a job.  They are new to the state and don't know a lot of people.  She needs a lot of prayer.  Her husband is a die hard alcoholic.  He loves the Lord, but loves his drink as well.  She really let it all out last night.  She said how alone she feels at times.  I could feel her hurt, anger and frustration.  As we were getting ready to leave, I felt the urge to talk with her.  I went up to her and told her I know how she is feeling, I too am going through something no one should have to go through.  When I told her husband was terminally ill with a very rare form of Alzheimer's had another year to year and a half, she didn't know what to say.  I told her her husband is very sick as well, only in a different sort.  I suggested she call me when she gets so down, I would be happy to help her.  Who knows, maybe we can help each other.

God works in mysterious ways.  I did not want to go last night, as my body hurt from pushing husband at the zoo.  I went anyway and met this woman.  I felt in my heart that God made me go so I could meet her and talk with her.  I want to help her.  I know the anger one feels toward their life.  I know the frustration.  I know what it feels like to have no hope in your life.  I know how at times, I have been brought to my knees, shaking my fist at the heavens and crying out, "Why?"  "Why him, why us?"

Of course, her husband is not technically terminally ill, but sick just the same.  And,he needs help.  A lot of it.

Yes, God works in mysterious ways.  He gave me the opportunity to meet this broken woman.  I can just imagine if He did the introductions:

"Broken woman, meet this broken woman."

Friday, May 11, 2012

Yeepp!!

EEG went well.  Of course we didn't get the results, they will be sent to Dr A.  We were at the hospital for about 2 1/2 hours.  While husband was sleeping during this EEG, I went to Starbucks, got an iced coffee, came back and read the newspaper they (hospital) provide.  Actually, read the entire paper.  Felt good to sit there and not have to talk, just sipping on my coffee and reading.  Oh yes, I remember those days.

They let me go with husband while they prepared him for the EEG.  As we were walking towards the room, the tech was chattering away with husband, asking him all kinds of questions.   He, of course, was nodding his head and I knew that was my cue to interrupt her to explain just what was wrong with husband.  I tapped her on the shoulder as she was pushing husband in his wheelchair.  I quietly said, "He doesn't understand you.  He has Alzheimer's.  If you need to ask him something, please ask me."  Oh dear, the look on her face.  Poor thing.

The tech started to put the electrodes on his head.  We were talking about everything.  Out of the blue, husband says, "Yeah, my legs may be weak, but my mind is as clear as a bell."  Silence.  You could hear a pin drop.  The tech looked at me, stunned, I winked at her and said, "Yeepp."  She started to chuckle, I started to chuckle and husband?  Why, he looked so proud of himself and smiled a great big smile, proud  that he had made a statement!!

I say "Yeepp" because we are big fans of Storage Wars.  I am hopelessly hooked on that show.  One of the bidders always says, "Yeepp" when he wants to up the cost of unit that is up for auction.  We get a kick out of this guy.

In our situation, you gotta find something to laugh about.  It's not all doom and gloom around here.  Of course, the tech didn't know what I meant when I said, "Yeepp", but, husband did, and that's what matters.

When I was driving home he said, "I remember you saying "Yeepp", did I dream it or did you say it?"

My answer?

"Yeepp."


Thursday, May 10, 2012

EEG today!

Off to UNM Hospital for husband's EEG.  Last night was difficult as he had to only have 4 hours of sleep before this test.  Why, I don't know.  Whew, I'll need a nap before the day is over.  Husband will probably sleep most of the day.

Thank you for the uplifting comments on my decision to place.  I know it's the right thing.  It's trying to convince my heart it's the right thing and that'll take some time.

I will post results if any today.  Otherwise, have a blessed Thursday.

Wednesday, May 9, 2012

Another decision, another heartbreak

Bible Study yesterday.  I haven't been in quite awhile.  It was nice.  I got to talk to my dear friend about nursing homes. Her mom had Alzheimer's too.  She had to put her mom in one when she got too much for them to handle.  J said they went every day to visit her and help care for her.   She also said that her mom became very nasty to her.  Said it was heartbreaking, the things her mom used to say to her.  But, she reminded me, it's not the person being mean and nasty, it's the disease.  I do know that and remind myself of that each and every time husband becomes nasty and mean.  It's hard, mind you, but it's another "perk" of this disease.

I thought of nothing but nursing homes yesterday.  I think I have made up my mind to place him, once he gets out of control.  Please don't judge unless you've walked in my shoes.  I know my limits.  This decision has been a hard one and heartbreaking.  It will need to be done.

I am somber this morning.  But, I've made up my mind.

Father in law said he regretted not putting mother in law in a nursing home when she became too ill to do anything.  I don't want to live with regrets.  I want what's best for husband in his last days, and, I'm afraid I cannot give that to him.  He needs to leave this earth with dignity.

Tomorrow is the EEG.  Am anxious about the results.  Hopefully, they can narrow down seizure activity and prescribe accordingly.  Husband says he doesn't want to go.  Can't blame him, all he ever gets is bad news anymore.

Jack is now finished with school, seniors got out early.  He has to go to summer school in order to get his diploma.  Short 1/2 credit to graduate.  He will graduate in August.  Then, it's off to the Air Force.

Now that I will have the car every day, I am wanting to take husband to the zoo on Friday.  We both love the zoo.  Thinking of packing a lunch and spending the day there.  He needs to get out of the house.

So that's what is happening in my life to date.  Sad about my decision, sad/excited for my Jack.  All the emotions in dealing with husband has come to surface.  Lately, it's been hard to swallow.AA

Tuesday, May 8, 2012

To place or not to place

Yesterday went a little smoother than Sunday, but, husband is still locked in that place they call Alzheimer's.  He makes no sense, does not hear right anymore, or, it's just that his brain cannot compute what he is hearing.

When I talk to him, I now have to speak slowly.  And even then, I have to repeat myself several times over in order for him to understand.

I kept the car yesterday.  I had to get out.  I knew I was on the verge.  Kristen didn't have to be at work until 11:30, so off I went.  I went to an Arts & Craft store, looked around, got some ideas.  Went to Lowe's, browsed around there.  It was what I needed.  I was gone for about 1 1/2 hours.  I drove home slowly, delaying and dreading my arrival at home.

Husband was very quiet and kept giving me dirty looks.  In my mind I was thinking if he starts in on me again, well, shoot, I'll just leave again.  Of course, he didn't.  I did take him for a drive in the afternoon.  He liked that. While I was driving, I would glance at husband and observe him looking around.  There was absolutely no recognition of where we were at.

I don't know where we are going at this stage.  All I know is the damage done to him is overwhelming to me.  I kept thinking last night of what to do with him when he gets so bad, (as if this isn't bad enough?) and, I can no longer control him.  Do I put him in a nursing home?  What would he think, if he does understand?  Would he hate me?  What about the cost?  Could I do this?

When I think about this, the thought of him being gone from the house and in a home brings somewhat of a relief to me.  I can't help it.  Would I be failing him if I do this?  I promised him a long time ago I would never put him in a home, but, that was on the Day of Diagnosis.  This is today, 2 years later.  A lot has changed in the last 2 years.  I also have to think of me at this point.  Gosh, when I say that, I feel so selfish and self centered.  I'm not that way at all, but, I have to think of me as well.

Has anyone else gone through this?  I know I'm not alone but I feel alone in my decision.  I think it would be best to place him.  When I say it, I want to cry.  Some may think I'm washing my hands of him.  Not so.  I would visit him every day.  Then, I think, would they care for him the way I do?

Once again, I didn't ask for any of this.  I hate it all.  Everything about this disease.  And decisions.  Who thought I was so smart that I could make life or death decisions?  Who, I ask?   Who thinks I'm so strong that I can handle anything that comes my way?    Certainly not me.


Monday, May 7, 2012

Hide your car keys!!

Sunday.  Church.  Birthday dinner for my Marie.  It was not a good day.  At all.

Husband has continued to be lost.  I think he realizes he's lost, somehow, someway.  And, it's all my fault.

During services, he slept.  I noticed his head bobbing, hands folded on his chest and his head dropped down.  I decided to let him be.  While we were singing, he got up from his wheelchair, held on to the chair in front of him.  I said nothing.  As we were sitting down, his legs started to tremble something awful.  He barely made it back down;  it was a violent tremor.

Driving home, he began to tell me that Dr A does not know what he's talking about.  Where that came from, I have no clue.  As with everything else, I agreed and kept driving, not once looking at husband.  Then he proceeds to tell me that Dr A had no right to notify DMV about his "issues", he said he drives fine and does not like Dr A anymore.  Says he would not listen to husband at our last visit, he only had "a little problem driving a stick shift is all".  Says he can drive an automatic with no problem.  Said he is going to drive my car whether I like it or not.  Period.  I kept driving, not saying anything.

Car keys are now being hidden.

It went from bad to worse.  Nothing I did was right, nothing I said was right.  I tried to avoid him without him catching on that I was trying to avoid him.

I.  Hate.  This.

All of it.  This monster has taken over his very breath.  It permeates the air in this house.  It lurks in every corner of this house.  Even the dogs try to avoid him.

This is not my husband.  My husband has "crossed over."  Does he now reside with God, in his mind?  God, are you keeping him?  Where is my husband?

How I mourn for everything lost to this monster.  There are days that I think this is not fair.  Today is one of those days.

However;  it is what it is.

Sunday, May 6, 2012

Keeping busy

Not much to report.  Husband is failing in the here and now.  Seems angry much of the time.  As I was cleaning yesterday, he would get in my way.  When I asked him to move, he would become angry with me.  He is parking his scooter chair in the middle of the dining room.  I will move it, he gets angry that I've moved it.  I explained that it is in the middle of the room, but, to no avail.  Man, this is hard and only getting worse.

The seizures are back, quite strong.  Kept me awake for about 2 hours last night.  Not a whole lot of sleep for me last night.  Then, the dogs woke me up a little before 6.  Never ending.  The heaviness in my head just won't go away.

I bought some flower seeds the other day.  Planted some of the seeds in pots for the porch.  Hope they come up.  I love to plant and watch them grow.  Fulfilling for me.  Supposed to start coming up in 10-14 days.

I am trying to stay busy.  Been working in the flower beds.  We have a beautiful rose bush and another climbing rose bush.  The blooms are so pretty.  There are other plants as well.  They are all so pretty with the blooms.  On the other side of the driveway, I have a honeysuckle vine and a jasmine vine.  When you walk into the driveway, all you can smell are those vines.  The bees love it as well.

Wanted to get started on my stained glass painting, however, I haven't had time to go to the hobby store and see about their prices.  I am keeping the car for husband's EEG Thursday, may go then.  Want to get started, my mind and body is itching to do something.

In the meantime, I continue to be on this roller coaster that has become my life.  I oftentimes resent husband for the way he is.  Can't help it.  Guess it's normal.  I also know he can't help it.  Which makes it harder on me.  I have no control of this situation.

Today, I am making my Marie's birthday dinner.  Her actual birthday was last Monday.  She wants me to make enchiladas, beans & rice.  Easy enough.  That will be fun.  When the kids come over, I get to forget and pretend everything is OK.  I get to laugh.  I get to escape.

Husband is still asleep.  Don't know where he will be when he wakes up.  I hate this living on the fly.  You can't make plans because you never know what world you'll be working from before he wakes up.  We can go anywhere with this monster.

This journey has taken me to the depths of hell and continues to do so.  It's only getting worse.  How I wish, at times, it was over.  This is not what I had envisioned for us, for me.      

Friday, May 4, 2012

And they're off!!

I made it to Friday.  It's been a week, but, I made it through.

When I went grocery shopping, I made Kristen go with me to help me with husband.  Those two.  I pretended I didn't know them.  Kristen got the bright idea to race husband.  He with his wheelchair, she with a shopping cart.  People were laughing and smiling at them.  Husband was grinning from ear to ear.  At one time, he found me and on his lap were 10 bottles of Powerade.  I opened my mouth to speak when he said, "They were 10 for 10 dollars."  How could I say no?

I also had to go to Whole Foods to get my tea.  When I pulled in the parking lot, Kristen said, "Hey, Daddy, wanna race again?"  His eyes lit up and I immediately said, "NO."  Told them I was running in and out.  When I got back out, they were jamming to the radio in the car.  What a sight.

When we got home, I noticed that father in law had called.  He wanted to spend the day with husband.  He came to pick him up and told me he was taking husband to Wal Mart.  It gave me some quiet time before I had to get Jack from school.  That was nice.

Husband got home around 4:30.  Father in law looked a little upset.  I didn't ask him what was wrong because I could see what was bothering him.  Husband was having tremors that rocked his whole body.  I helped him in the house.  Father in law stood at his truck looking very sad.  I could see his heart was breaking for his son.  I told him I would take it from here, husband needed to rest.  He looked relieved at that point and left.

Husband rested the rest of the afternoon and evening.  Tremors seemed to subside.  Didn't eat too much for dinner.

When I asked husband if he had had a good day, he smiled, closed his eyes and said, "Yes."  Was he remembering racing through the grocery store with Kristen?  Did he remember he laughed, out loud?  I hope so.  I really do.

Thursday, May 3, 2012

A new day, hope renewed

Husband has continued to be in his own world.  This has been a very hard week for me.  I have had so much on my mind and the finality of it all has sunk in.

There have been days that I didn't think I'd make it through, but, somehow, someway, I made it.  I can't pinpoint one certain thing that has happened, it's a combination of everything that got to me.

On a positive side, the seizure activity at night has subsided.  There are constant tremors during the day,  making me scratch my head at times.  I guess I will get my answers to this when we go for an EEG on the 10th of this month.  This test will measure brain wave activity and the abnormal activity.  Because I have done my research, when all these specialists talk to me, I actually understand what they are saying.  Guess it pays to do your homework.

Husband is in a constant state of confusion.  This started last week and has not let up.  Usually, he will go in and out.  Not so this time.   This confusion results in him becoming angry/scared at what's happening to him.  I can only imagine what he is going through.  I try to use a soft, calming voice to ward off any fears he may have, but that only works if he is in the moment.

I have to do heavy grocery shopping today.  I know he will want to come along.  I can't say no, but, taking him to the store with me is like taking an unruly, spoiled rotten child.  I have to make sure he doesn't wander off, put things in the basket I cannot afford, or, strike up a conversation with someone he doesn't know and start talking crazy to them.   When this happens, they look at me as if to say "What the heck?  Is he for real?"  That hurts me, for husband.  He doesn't know what he's doing, I want to say.  But, I leave it unsaid.  I walk away, with husband.

The weather has been beautiful lately.  I have encouraged husband to go on walks with me.  In his scooter chair.  He loves getting out in the fresh air.  I love it too.  It's good for the both of us.  I look forward to that everyday now.  We have a pool here.  It's private, only for residents.  You have to pay a yearly fee to have access to the pool.  Husband wants me to pay the fee so he can go in.  Maybe, I said.  We walked by yesterday.  They have taken the cover off  and someone was vacuuming the pool.  It did look refreshing, that pool.

The start of a new day.  Busy day for me.  I kept the car today.  Took Jack to school.  It's a beautiful morning.  As I was driving back home, I looked at the mountains, so big and bold.  The sun had come up over these mountains, bathing the entire city with it's light.  In this brightness, I saw a glimmer of hope.  Hope for me.  I made a decision to have a good day today.  I have to.  

    

Wednesday, May 2, 2012

Maybe?

Took a few days away from posting.  I'm in a funk and don't know how to get out of it.  Everything has hit me all at once.  Just......everything.

I read yesterday that Bobby Vee, a 50's pop singer has Alzheimer's.  He said he's feeling just fine and has a good outlook on his disease.  Are you kidding me?  A good outlook?

Want to see the real "outlook"?  Come to my house.  In my house you will see what Alzheimer's does to you and your family.  Watch as husband attempts to get out of bed in the morning.  Watch as he stumbles to the bathroom.  Watch as he has seizures.  Watch as he get's lost in his own home.

No, there is no good outcome of Alzheimer's.  People who don't know a thing about Alzheimer's and have read that article will probably come away thinking oh, OK, so he's got Alzheimer's, but, he'll be fine.

I read that article and it upset me.  Especially when right after reading it, husband comes and asks me for the 5th time what day is it.

Husband is not doing well.  He's lost in his own world again.  I'm in a funk.  Bet you're sorry you logged into my post, heh?

Honestly, this blog is the "real" side of Alzheimer's.  This is the devastating effects on a family once so full of life.  This is not some glamorized article.  It's the real deal.   This blog deals with real issues.  Mental, physical, financial, and spiritual.  In this blog you find me speaking from my heart and baring my soul to cyberspace.

Maybe tomorrow I will be back to my old self.  Maybe,  I hope so.  Maybe tomorrow I can wake up and find something to smile about.  I have hope.  Maybe tomorrow I can come on here and post a positive post.  Something I can give my readers.  Something to chuckle about.  Something you can share with co-workers or a family member.  You deserve a better post than this one.

Maybe tomorrow.......................................................................................................................................