Husband's last camping trip

Husband's last camping trip

Sunday, April 29, 2012


Irritation.  That's me right now.  I became irritated with husband starting Friday night.  It lasted all day yesterday.  Everything he did irritated me.  He would stand in the living room as I was trying to vacuum.  Ask me questions I couldn't hear over the vacuum.  Watch me as I dust mopped.  Just, everything.

Today I will try not to be irritated.  I don't like being this way.

I went grocery shopping yesterday.   Husband wanted to go too.  Lovely.  I told him he would have to use the wheelchair in the store.  He did.  He also kept up with me.  That was OK.

Husband heard on the news that blueberries were loaded with antioxidents, (he couldn't pronounce  the word, I had to pronounce it for him).  Told me they were very good for you.  I already knew that, but, played along with him.  When we were at the store, he wanted me to buy some.  They are not cheap and I couldn't afford them.  I found blueberry pancake mix so he got his blueberries.  The pancake mix may not be good for you, but, hey,  when you're on a budget, you're on a budget.  He's looking forward to his blueberry pancakes this morning.

Stopped off at  father in law's house.  Just to say hello.  Lupe acted like we were intruding.  If you don't know already, Lupe is father in law's wife.  I don't care for her, but am always polite, keeping her in our conversations.  Father in law was happy to have us stop by.   He was in his backyard, so, we went out to visit for a few minutes.  Lupe stayed in the house.  She makes me feel uncomfortable every time I go over there.  That irritated me.  Father in law thanked me for stopping by.

Today is church.  I don't want to be irritated in church.  I will pray that this irritation will cease.  I call my mother every Sunday.  I pray she will not irritate me.

A new week will begin.  I will try to find something good in this new week.

Friday, April 27, 2012

Hope renewed?

My days all blend into one another since quitting my job and caring for husband.  Some days can be very boring, and let's face it, you can only clean so much.

I have a routine down and find myself restless by 10 AM.  Not much to do after that.  I have been wanting to do something with my hands to keep busy.

I started painting last summer, or, trying to paint.  Tuesday afternoon, I got out the paints, brushes and tried again.  I then realized that I have no talent whatsoever and am only making myself frustrated.

Sitting here, I thought what would I really love to do.  A few years ago, I had done some Stained Glass Painting and was really good at it.  I can't screw it up because you use a pattern.  I then started researching it on the internet and found a bunch of websites that offer cheap ways to create beautiful stained glass projects.  In some of these websites, they suggested instead of using glass, use a substitute, like, Plexiglass, only buy the paints when they are on sale, or, buy the standard 5 colors, using a combination of those to make all the colors of the rainbow.

I found free patterns you can print out, take those to any place that has a copier and blow them up to fit your frame.  Cheap!

At Home Depot, I found a package of 12 11X14" substitute glass for $33.00.  That's 12 projects for me.  Good enough for me to start with, at least.  And, what's good about stained glass painting is, if you don't like it, it peels right off, making it easy to start all over.

I am going to look at garage sales this weekend for a small table to work from.  I will have to start off small, using simple patterns and see what comes of this.

My life has taken a drastic turn of events beyond my control.  What I am facing no one should have to go through.  No one should have to watch as their loved one slip away into their own world.  No one should have to treat your husband as if he were a two year old.  No one!

I woke up this morning with something I haven't felt in over two years.  I couldn't put my finger on it.  Then, as I made my espresso, it hit me.

It was the feeling of excitement.  I am excited.  What a feeling!

Thursday, April 26, 2012

Games people play

I took husband with me for my walk yesterday.  I had to force him to go, but, once we were out, he began to enjoy it.  I figured why he was so hesitant.  He has a fear of falling out of his wheel chair.  When we got to the park, he had to go up the sidewalk.  His chair will lean back as he goes up, but, the sidewalk entrance is made for wheel chairs.  The fear in his eyes.  I made him go up and down a few times to get over his fears.  When we were going up our driveway, I coached him along and he seemed better.  We will go out again today.  I sure am enjoying it.

As we were walking along, we stopped to see a neighbor we have known for a very long time.  She has not seen husband in as many years.  She knew of his illness, but, I don't think she was prepared for seeing him and the way he is now.  Thankfully, she recovered from her shock and told husband how glad she was that we had moved back to our old neighborhood.  Husband did not seem to understand her.  When he doesn't understand, or rather, compute what you tell him, he will nod his head.   That's my cue, letting me know he's in his own world.

Judy and I would be talking, when, out of the blue, husband would look up and say, "We sure like living here again."    After he said it several times, Judy decided to speak directly to husband, telling him each time she was glad we were back as well.  Bless her, she caught on right away and acted like it was nothing.

As we started to leave, she squeezed my hand, gave me a look and we were on our way.  When we had turned the corner, husband said, "It sure was nice talking to Judy."  Yes it was, I said.

It's hard on me when people who haven't seen husband since he became so ill, see him now, in this state.  The look on their faces make me cringe sometimes.  Some handle it well, like Judy, others, not so well.  He doesn't have an infectious disease, I want to scream.  Don't be afraid to touch him, or shake his hand.  You can't "catch" what he has.

We will go out again today.  It's good for husband.  It's good for me.

Husband woke up early this morning.  He is in a somewhat not so good state.  When he is this way, I go along with whatever he has to say.  Agree with anything he has to say.  He won't remember it anyway, so what's the use in it?  I don't like days like this.  Days like this I wish I was somewhere else.  Someone else even.

Let the games begin.  

Wednesday, April 25, 2012


I took a walk yesterday.  Actually, I took two walks.  Snowball took two walks also.  With me.  He loved it.  When I got his leash out, he started spinning in circles, he was that excited.  I would've taken Bessie, but, she hates the leash.  Hates it.

We walked to the mailboxes, we walked around the neighborhood.  We met some other dogs.  We live in a gated community, separated from the other surrounding neighborhoods.  I felt so good, I did it again.  Well, OK, the mail hadn't come yet, so we went again, later.  We will be walking again today.

Husband slept most of the morning.  He was in a so so place when he got up, ate his breakfast and promptly fell asleep in the chair.  I decided not to wake him.  Let him sleep, I thought.  When he did wake up, he got up and went to the bedroom.  He slept for another 2 1/2 hours.

Husband is not in a good place, nor is he in a bad place.  It's not something I've seen before.  Kind of in between reality and his world, but in a quieter, calmer way.  There seems to be no agitation, no sudden panic attacks, just a limbo kind of existence.  He did however, have a seizure during his nap.  I happened to go into the bedroom, glanced at him and saw him seizing.  I calmly sat at the end of the bed, watching it and timing it.  I silently glanced at the phone, calculating how many steps it was to the phone, thinking 911 was just a phone call away.  As suddenly as it started, it stopped.  He coughed and it was over.

During the 25 seconds of this seizure, I thought about what is happening to him.  Surprising how much you can think about in 25 seconds.  My mind was racing during this time.  So many thoughts came to mind.  And then, like a roller coaster ride coming to a jolting stop, it was over.  Boom.  I sat there for a few seconds.  I could hear birds singing outside, a dog was barking down the street.  Life was still happening outside.  Life is ending inside.

I was a little more serious the rest of the day.  Not sad.  More thoughtful maybe?  I did not tell husband he had a seizure.  Decided to keep it to myself.  It only scares him anyway.

It's my secret.  Now, it's yours too.  

Tuesday, April 24, 2012

Perks of Alzheimer's

I made a delicious dinner last night.  It was very warm here, and cooking was the last thing I wanted to do.  I had leftover chicken, so I made a salad, cut up the chicken and put it on the salad.  Husband pouted on the bed because he did not want a salad for dinner.  Wouldn't talk to me, sat, staring at the TV.  Had his arms crossed over his chest.  Mumbled a lot.  Gave me a dirty look at I handed him his dinner.   After he ate his diner, he said it was so good, he'd like that more often.  What?

This is the way it is around here now.  It's not just the food I cook.  It's everything.  If I go out to sweep the patio, he says I'm not doing it right.  When I bathe Snowball, he will "supervise" on how I do it.   When I go out to water the flowers and grass, he will stand at the front door, making sure I "do it right".  I cleaned out the car on Friday.  He checked it over once I was done and declared the car clean.

When I talk on the phone, he will hear me and come out into the living room or kitchen.  He will pretend he is looking for something in the fridge, or, stand at the sliding glass door, looking out, act like he is looking for the dogs, check the fish tank out, check the filters, look at the fish, check out his scooter chair in the dining room, check the light bulbs in the lamps, look into the fireplace, or, sit in his chair and pretend to watch what is on my TV.  All the while, listening to me on the phone.

You know what?


These are some of the traits he has developed since this monster has invaded his brain.  Sometimes, I can laugh at it, other times, I go crazy.  He does not realize he is doing these things, because he can't remember.  I used to call him on the carpet about it, but, he would look at me as if I was nuts.  I don't say anything anymore,  I actually try to be amused by it.

Alzheimer's/Dementia patients are really funny people.  They take on a whole new personality.  At least, husband has.  Yes, it can be maddening at times, but, I'm trying to get a laugh out of me, so, I look at it on the flip side.

As much as I hate this monster, I do, (or try to) see the funny side of it as well.  This is not the man I married so many years ago.  That man is gone.  But, in his place, I have this funny, quirky man, who may be dying, yes, but, will give me a laugh without knowing what he is doing.

Hey, we all need a good laugh daily.  And, husband delivers that to me on a daily basis.  I just have to keep laughing.

It's better than the other option I have available to me.

Monday, April 23, 2012

Who does that?

Very low key Sunday.   Went to church, great as usual, came home, fixed a snack and that was it.  

Husband took his scooter chair out for a ride.  I let him go alone as he needs to feel independent.   Said he enjoyed it.

We are having warm weather so it was beautiful yesterday.

I ran to the store in the afternoon.  As I was driving home, I noticed a lot of cars lined up at a car wash.  They were very busy, these car wash attendants.  While sitting at a red light, I thought these people, who had brought their car to the car wash were a little ahead of themselves.  Its only April.  We will, for sure, get another blast of nasty weather before we can assure ourselves that the summer and warm weather is upon us.  "Not so fast people", I thought.

This "tease" of warm weather reminds me of my life now.  Husband has been stable for the past several days.  But, I don't fool myself anymore.  It's coming, this sudden decline.  It's only a matter of time.  So, when people say to me that husband looks and acts great, I agree, but, I add, it won't last.  Trust me, it's not negative thinking or by any means, producing a negative outlook, it's the facts.

Just when I used to begin to relax, the next onslaught would hit.  It could be a slight change or, it could be a big deal.  I never know.  So, now, I cherish the here and now.  I don't worry anymore about when it will end.  I wait for it, am prepared for it, and, when it hits, it doesn't bring me to my knees anymore.  It just happens.

Before diagnosis, I would never have thought that so many things would interact with my life now.  Would interact with my thought process.  Would relate to my life now.

Who sits at a red light, watches people getting their car's washed and relates it to their life with a terminally ill husband?

I do, that's who.

Sunday, April 22, 2012

Little things

Husband got his ramp built for the front door yesterday.  Freedom for him.  Our friends from church came and built it on the spot.   It's really nice.  Can't wait for us to go on walks now.  A ramp means husband can go outside when he wants,  "stroll"  around the neighborhood, get the mail, water the lawn and get some fresh air.

I have learned these past 2 years to appreciate even the simple things.  When someone you love is diagnosed with a terminal illness, your whole life changes.  What used to seem so important doesn't really matter anymore.    What matters now is your "new" life and the changes it brings.  The changes in my life have been drastic.  I no longer am the same person I was.  I feel different.  I feel stronger.  I feel vulnerable.  I feel a different kind of sad.  I do feel happy, only a different kind of happy.  I do still fear the unknown, but, God somehow puts those fears to rest for me.

When husband has a good day, I have a good day.  When husband has a bad day, my heart breaks for us.  When husband can laugh with me, my heart is full.  When husband sleeps all day long, I worry.  When husband doesn't know what day it is, there is a heaviness within me.  When husband is wheeled out of church and remembers what the message was about, my soul soars.

So, you see, it's the little things in life that are important to me now.  You do adjust.  You have to.  You have to go on.  The world didn't stop on that fateful day in April of 2010, it simply changed when the Dr spoke those few simple words beginning with, "I'm so sorry."

Yes, how different everything is now.   There is now a ramp at our front door.  That simple, little ramp.  How a few pieces of wood can make such a big difference in one's life.

Yes, folks, it is the little things.

Saturday, April 21, 2012

A new look!!

Was playing around this morning, decided to give this blog a face lift. I needed something brighter. The old look was boring. Depressing even. Hope you like it. I wanted a change.

 On the home front, everything is OK. Husband has been stable the past few days. I know it won't last, but, for now, it's all I have. Night time seizures have subsided somewhat. Not bad at all. I've noticed his legs are almost completely gone now. The movement is so stiff. He will literally drag his legs. He holds on to the walker in the house for dear life.

 Husband wanted to water the lawn yesterday morning. He actually went out on his own and did so. I checked on him a few times. He left the walker on the driveway and made his way to the faucet. I decided to not say anything to him and let him do the watering. I'm sure he gets so sick of me hovering over him. When he came in and told me he did all the watering by himself, he acted proud. Of course, I made a big deal of it as well.

 I have not slept well for a few days. When I do sleep, I have some crazy dreams. It's not because of husband keeping me awake. He has slept pretty good. It's just me. And what's on my mind. And, what's ahead of me. And, decisions I have to make. And, financial. And, what will happen to me.

 This is not easy, folks. Caring for someone who is dying is never easy. Ever wonder why they call the family of a deceased person Survivor? I do now. No, he's not deceased, but he is gone. I often wonder how I will be when he is physically gone as well. Will I crack up? Will I lose it? I honestly don't think so, but, the thoughts enter my mind in the wee hours of the morning.

 In the meantime, I go about my daily life. I care for my family, I clean my house, I cook meals, do laundry, pay bills, grocery shop, make sure I laugh daily and live my life, getting the most out of each day.

 Someone once said that for believers, this is as close to Hell as we'll ever get. So, this my Hell on Earth.

Friday, April 20, 2012

A Poltergeist?

Not much going on yesterday. I decided to get out the dog clippers and trim my little Snowball. He is a Maltese and you have to brush him, alot. Once I got the hang of it, it went well. He did not like it one bit, but, was patient with me. After his hair cut, I bathed him and he looks so good now.

Husband was quiet, helped me some with Snowball. Other than that, he stayed on the bed and watched TV. Somewhere between his "world" and the real world. In and out of reality. No sudden lapses. I would walk in to check on him, he would glance at me, then back to staring at his TV. A few times, there would be no recognition of me. Other times, he would ask me a question.

In the afternoon, I went into the kitchen to make me what I call my afternoon "cocktail", an espresso. Standing in the middle of the kitchen was his walker. When I took it back to the bedroom, I parked it against the wall on his side of the bed. He looked at the walker, then to me and there was no recognition of me or the walker. Almost as if to say, "what's that?" I didn't say a word, walked back out to the kitchen.

When I find the walker all over the house, it reminds me of the movie, Poltergeist. How the mom would find things stacked up or strange things all over the house? We have two hallways. One leading to the front door and our bedroom and one leading to the other bedrooms, laundry room and the second bathroom. I'l find the walker in that hallway. I'l find the walker by the front door. He will use it, then leave it.

A few days ago, he came out of the bedroom, took the walker to the other hallway, left the walker there, then went back to the bedroom. Why, I don't know. I have learned not to ask why he did something because he doesn't know why.

Yesterday wasn't bad, nor good. It was just a day. Will see what today brings when husband wakes up. Before that happens, I always ask myself what side of the rainbow I will be on today.

Thursday, April 19, 2012

Welcome back!

Father in law took husband yesterday for the whole day. He picked husband up around 9 and did not bring him back until 3:30. Ask me how my day was. Come on, I know you're dying to ask. Well, it was..............................


I was in my zone. I did not speak a word, (well, except to the dogs, but they don't talk back) the phone rang a few times, I took a long, hot shower and the rest of the day I did nothing. Absolutely, nothing. Can we all say AMEN?

I love my husband. I love caring for him. I love making sure he is comfortable, happy and making him special meals. However, when he is in his own world, it drains the life out of me. This disease has taken over my entire being. It's suffocating me.

While husband was gone, I played a game with myself. I play pretended that husband was well and at work. I was a stay at home mom, taking care of her household. I wanted to feel what "normal" felt like again. I had to "go there", just to feel alive again, feel what I used to feel like.

Jack came home from school, we talked about his day, I told him what I was making for dinner. It all felt so normal, almost real. Almost.

Husband got home, I visited with father in law, Jack visited with his grandpa. Father in law left. As I was cooking dinner, I asked husband if he had eaten at his dad's.

He looked at me with that blank look, scratched his head, looked around the room, cleared his throat, looked back at me and said, "I don't remember."

Like a splash of ice cold water, I was back in my "real" life. Here it is, I thought. Welcome back to reality.

Wednesday, April 18, 2012

Big Trip!!

It wasn't a good day yesterday, nor, was it a bad day. Husband woke up in a weird mood. Nice one minute, not nice the next, depressed the next, happy the next. He ate a good breakfast and went back to bed until about 1:30 or so.

When Jack got home from school, I took the car to get gas. I asked husband if he'd like a coke. He asked me where I was going (I had just told him where I was going) and demanded I take him with me. Now, this gas station/convenience store is just 2 blocks away and to take him with me was the last thing I wanted to do. It takes longer to load him up in the car than it would be for me to go myself.

Smiling through gritted teeth, (here we go with the acting again, oh Hollywood, where are you?) I said, (add a little bit of sarcasm and you get the picture), "sure, come along with me." So, off we go for this big trip, 2 blocks away.

In the two minutes it took me to drive there, husband decided HE wanted to go into the store and get a candy bar as well as the coke I offered to get for him. Oy, oy and another oy.

He insisted on using the walker because HE said the wheelchair would be too much for me. Gee, thanks.

Once we finally got in this small convenience store, rush hour was beginning, people were coming in to get drinks, snacks and gas after their work day. I could see traffic building up outside. McDonalds is next door to this store and the line was beginning for form there as well.

Husband took his time deciding on which candy bar to get. I had already paid for my gas and his coke. The store clerk kept looking at husband, then at me, then back at husband. When husband came around where the clerk could really see him, he realized something was wrong with him mentally as well as physically. Gave me a sympathetic look as I paid for his candy bar.

Got husband settled back in the car, loaded up the walker, got my gas and headed home.

What should have taken me 10 minutes tops, took 40 minutes. When I got back home, Jack asked me what took so long.

Happily, I can report, Jack is still able to walk and talk and I, his mother, did not kill the kid.

Another glimpse into Mi Vida Loca!!!

Tuesday, April 17, 2012

Downside, Upside

Husband has gone back into his own world again. It happens so suddenly. One minute, he is there, the next, gone. He will silently slip away and retreat into the unknown.

There was a movie a long time ago called Sybil. Sally Field starred in this movie and I believe she received some kind of TV award for her role. It was a mesmerizing, true story of a young girl with multiple personalities. She eventually overcame this illness, with years of help from a Dr.

In this movie, the Dr would ask to speak to one of the personalities. Her face would go blank, she would drop her head and a certain personality would suddenly appear. The face would take on a whole different look. It was stunning, her portrayal of this woman.

Husband, in a way, is like that now. When he is "there", his face looks different. Not the eyes, but his face. When he goes into his own world, his face takes on a whole different look. The eyes stay the same. At times, they look even bigger, rounder. Once I see that, I know he is "gone".

Living with someone with his type of disease, you learn to adjust to the changes. I watch and listen when he is "gone", sense what kind of mood he is in and go from there. If it is anger he is showing, then I try to defuse the anger. If it is one of sadness, I suggest ways to bring him out of it. If it is depression, I let him sleep. If it is total confusion, I have to be ready for anything. If he wanders the house, I know agitation has set in. I make light of it, offering a snack, a TV show he likes, urging the dogs to play with husband or anything to occupy him. Sometimes it works, other times, he will fight me on everything. You just don't know.

There is no class you can take to learn this. I go on my gut instincts. When husband was diagnosed, they did not give me a study sheet. There was no book I could read on what to expect. Each and everyone afflicted with this is unique. Oh, sure, there are some things all Alzheimer's patients do, but it depends on their original personalities. No one told me this. I've had to learn it on my own. There is no Final Exam. All I've ever been told is, it's one of the hardest things I'll ever have to go through.

There are days that I surprise myself. Especially the hard days. Could it be that God was preparing me for many years? With 7 children, each and everyone one of the children had different personalities. I learned how to adjust to the many differences in my children. Now, after all the years of raising children, I am faced with the many changes in my husband. Here we go again, I often say to my self.

I'm not perfect, (gasp, what?) I make mistakes with husband every day. I get angry and frustrated. I oftentimes hate my life. I hate the position I've been put in. I hate not having the lifestyle I once had. I hate not having my husband whole. I hate everything about it. Everything.

However, in all of this hate, I see the good as well. I'm going to have my moments. Let me have them. To know that God has entrusted me to care for husband, as sick as he is, God knows I can do this. He is the one who gives me the strength to go on. A little worse for the wear, mind you, but, I will make it through to the end.

Monday, April 16, 2012


What a lovely day we had yesterday. Went to church. The message was about your personal relationship with God. Pastor Todd is doing a 5 week series on this. I left feeling determined to have a better relationship with Christ.

Because it was so cold, we went to father in laws's house to get some wood for our fireplace. When we got there after church, he had it ready for us. I had the best time visiting with him. Since the Genetic Test results, we have grown closer. It's like we have a new found understanding of one another. We laughed, him and I.

I told him about The Box and what I found. The picture. He was interested. I told him how much husband looks like him. Husband did not know I discovered this picture, so, he seemed surprised about the picture. When I told father in law how I found it, tucked away, neatly for so many years, his face lit up. He said, "That was her. If she cherished something so dear to her heart, she would carefully wrap it up and tuck it away."

His name was Isidoro.

Husband is doing OK. Not a lot of memory issues to speak of. He slept good. No seizures.

We have days when there are not a lot of memory issues. One can fool oneself into thinking he's almost normal. But, when you look at his eyes, you know something is wrong. I've said it before. I do not like looking at his eyes. They have changed. I call it, "The Look." They look rounder, one eye looks different. Hard to explain. They eyes are glassy looking, with a constant blank stare about them. You can see what this monster has done to his brain when you look into his eyes. It's a haunting look.

It was a pleasant weekend. A quiet weekend. A rather nice weekend. I laughed this weekend. I forgot, for a moment, while visiting father in law, what we are facing. It almost seemed normal. Well, as normal as you can get when you live in my house. But, I'll take it!

Sunday, April 15, 2012

Nag, Nag, Nag

It's Sunday. Church. We have gray skies, it's cold outside. I wish it would rain. I love the rain. The wind will probably come back up and blow the clouds away, giving rain to someplace else in the country. The sound of rain soothes me. Mixed in with a little lightening and thunder, the perfect recipe for watching an old movie with a hot cup of espresso. Yes, I love the rain.

Husband had a so so day yesterday. Tried to "help" me change the sheets on the bed. That didn't work out so well. His movements are very slow, as well as responses. I finally suggested he sit in the living room and relax. He was not pleased about that.

My husband, along with other Alzheimer's patients, think they are still "normal". He does know he has a "little trouble walking", but, they think they are fine. "I'm fine", he will say. Of course, we all know different, but it would be horrible of me to tell him, "No, you're not fine." So, what do you do? Why, you put on your acting gear, smile and go with it.

Husband spent the day on the bed. Came out for water or to ask me a question. Slept some. He would come into the living room, no walker, no wheelchair. I would ask him why he was not using either, he would look at me, blank stare, mumble something, turn around and attempt to walk back down the hallway. I would get ahead of him, get him into the wheelchair, take him back to the bedroom. This happened about 6-8 times yesterday. He told me that I nag too much. As I was wheeling him back to the bedroom. I chuckled. He heard me, said it was not meant to be funny, he meant it. Ok, I said, sorry to nag. He was satisfied with that answer.

I miss a lot of my old life, the other one, the one that was normal. There is a lot to miss. When I hear of other people's lives, how busy they are, doing projects around the house, going out to eat, taking drives, etc,. I can honestly say, I get a twinge. Jealousy? Envy? I don't know. God doesn't want us to be envious or have a jealous heart, but it's a twinge of something all the same. I think it's a twinge of having lost something, something you can never get back.

One of the things I miss is talking with husband. We used to have the best talks. We would talk about anything and everything. Now, when we talk, it's all one sided, with him nodding occasionally, looking like he is understanding, but, in reality, I might as well be talking to a wall. I have had to train myself to not discuss things with him anymore. It's a hard adjustment.

I crave adult conversation. I find myself talking to myself these days. And, yes, I do answer!!

Saturday, April 14, 2012

The Box

Another week has gone by. It was not a good week, nor, was it a bad week. There were some ups and downs, starting with the beginning of the week being not so good, ending with an OK. Just an OK.

I was going through some small boxes the other day, leftover from our move. It was things father in law had given us of his mom's. It was miscellaneous stuff. A pair of crocheted butterflies, some pictures and checkbooks. They were the carbon copies of checks she had written. They looked as if they were written yesterday.

I sat down and started going through those checkbooks. She had beautiful handwriting. I glanced at the date. It was in 1987. As I went through, I noticed her handwriting begin to wander all over the checks. The last entry was in 1991. The year she was diagnosed. I went back through the checks again. Those checks told a story. Her story of her decent into this madness. Her balancing of the checkbooks were so precise. In the beginning. Towards the end, there were crossing out of numbers all jumbled together. How lost she must have felt. And, suddenly, there were no more entries. There are still blank check checks left.

I put the books down and felt such an overwhelming sadness. For her, for husband. For all of us. I wanted to go back in time and tell her how much I love her and hold her.

I also came across a picture. A very old picture. It looked like she had cherished it for years. I had no idea who this man was. This man in the picture looked so familiar to me. As I was holding this picture, it was like this man was speaking to me. It was a picture of husband's grandfather. Her father. The one who was the first to get this horrific disease. He died when she was very young. She had this picture tucked away, all these years. The man staring back at me looks just like husband. The features are remarkable. Haunting. This man who has been gone for so many years seemed to speak to me. I found myself catching my breath.

I tucked this picture back into it's place in the box. As I was doing so, tears were running down my face. The box has been tucked away. I will keep her tradition of tucking away cherished things. I will honor her and her father. They were real people. They were loved. They will be remembered. Little did this man in the picture know, how, one day, after he was gone, after his daughter was gone, that his grandson's wife, while in the process of preparing for his grandson's death, would open this box and find this story.

And I mourn this grandfather. I mourn my mother in law. I mourn my husband.

Friday, April 13, 2012


The dogs woke me up early this morning. They needed to go outside, I guess. The little one, Snowball, is a feisty little character. He always gets excited when I throw the covers off of me and swing my legs over the side of the bed. That's his sign the day is beginning and he spins and jumps, making it difficult for me to get out of bed.

The bigger one, Bessie, is more subdued. She will stand at the end of the bed, waiting for me to get up. It's almost like she sends Snowball to wake me up, while she waits patiently, looking innocent.

And so my day has begun.

I was very blue yesterday. I had a lump in my throat all day. I don't know why. Nothing drastic has happened, in fact, husband was fine yesterday. I had this fear of something happening to me. Where that came from, I have no idea. I kept worrying that if something happened to me, who would care for husband? What would my kids do? I found myself praying for God to keep me safe.

My whole body was tense. But, I realized, it's always tense. I would catch myself, making my shoulders drop, relax, I would tell myself. Stop it, I would tell myself. It was not a good day for me. I pray today will be better. I can't let anything happen to me. Too many and too much is depending on me.

On the brighter side, our friends, Doug & John, from church, are coming today, to build the ramp for husband. It will mean freedom for husband. He will be able to go outside, ride around in his Scooter Chair, get some fresh air. I can't let him go too far, unless he is with me though. I am afraid he will become confused and get lost. We live off of a very busy boulevard and I shudder to think what would happen to him if he did become confused.

I have to make sure he "feels" independent, but in reality he is not. He can no longer think for himself, I do that for him as well. He relies on me for everything. So, I pretend to him that he is on his own, when in fact, I am right behind him. Hence, if he goes outside for a "walk", I go outside for a walk. Whether I want to or not.

Seizure activity kept me awake for quite awhile last night. Yes, they're back. Why is it that we can go for a few days with nothing, then out of the blue, they come back? Guess the EEG in May will give me those answers.

A recap of my day yesterday. If I had to give each day a grade, yesterday was a D-.

Thursday, April 12, 2012

"Broken cable box"

Yesterday was rather calm compared to the previous days. Husband was still in a "state", but, gradually, as the day wore on, seemed to come out of it.

When Jack got home from school, I took husband with me as I ran a few errands. I had to pick up a few things at the grocery store. Husband stayed in the car. When I got back out, he told me he had been people watching. Commented that he thought it was fun to people watch.

Later in the evening, he called me from the bedroom to say his cable box had "broken again". Husband has forgotten how to operate his remote and will press every button on the remote to change the channel or turn the volume up. It whacks out the cable box. I go in, he's in a panic, saying I need to call the cable company and tell them what they can do with this "broken cable box", again.

I, being the ever so patient wife, (uh, ok, not so patient wife), ignore him, re-set the box, and, like magic, it comes back to life. Husband looks at me like I'm some kind of magician and declares me a miracle worker. I don't have the heart to tell him all you have to do is re-set the box. He wouldn't remember how to do it anyway.

I go back out to the living room, Jack asks me what was going on, I tell him, he says, "Oh, he's always doing that mom. He looks at the remote like he's never seen it before, and starts pushing all the buttons." Jack and I have a chuckle over that.

Some of the things husband does, IS funny. Sad, but, well, funny. I have to laugh when I can.

This disease is so awful, so sad, so heartbreaking, that, at times, I don't think I can take anymore, then, husband does something funny, quirky even, that you have to laugh. Not at him, mind you, but for him, for me.

For the past few days, there has been no seizure activity in the night. A lot of tremors during the day however. His hands shake all the time. His legs tremor as he tries to walk using the walker. He looks as if he will topple over at any moment when he tries to use the walker. Soon, we will have to use the wheelchair all the time, and put the walker away for good.

Each and every morning, I look for something good in this day. Each and every morning, I get a fresh slap in the face when my husband opens his eyes and I immediately start looking for signs of brain dysfunction, seizure activity and loss of motor skills. Once I have done "inventory" on husband, I calculate what this day will bring.

And so it goes.

Wednesday, April 11, 2012

Out of the mouth of babes

These past few days have not been good. Husband has been in a very dark place. Depressed, at times, argumentative, wanders the house with his walker, asks me questions I don't have answers for, gets upset that I don't have answers. His memory is poor at best.

He was watching me do the breakfast dishes yesterday morning, when, out of the blue, he started to panic that the fish had no food. I reminded him that I got their food the day before. He looked at me as if I'd lost my mind.

After that, he went to the storage shed in our carport. He pulled out all of his tools (that's a lot of tools, folks) and just stared at them. Was he remembering the times he was able to use them? Was he longing for those days? He was out there for a few hours. I checked on him every so often. He would grunt when I asked him if he was OK.

When he was done, he came in and took a nap. Relief for me!

He was in better spirits when he woke up. The rest of the day he spent in bed, watching TV.

Marie stopped by. She was in our area visiting a friend. She also had some clothes Sean had outgrown and was giving it to Patti's little boy. Patti's little boy had tried on one of the shirts and began to play on the floor with one of his cars. Marie & Patti were sitting on the couch talking about how well the shirt fit him. Marie said, all of a sudden, Patti's little boy stopped playing, stood up, came to Marie and said, "Your daddy is sick." Patti, with mouth open, along with Marie, said, "Honey, what did you say?" Marie said he looked up at her and smiled. Both Marie & Patti said they got goose bumps. He did not say another word about her daddy being sick.

When Marie told me about this, she started crying. She kept saying, "How could he know these things?" Strange, yet comforting to me.

Some of my children do not like to talk about husband. They will avoid it at all cost. They will deliberately change the subject, or, outright say, "I don't want to talk about it." Marie, being one of them. However, yesterday, she talked about it with me. She cried to me. She let it out. She has finally, after 2 years, accepted the fact that he will indeed die. I was hurting for her, but, relieved at the same time.

As Marie was leaving, she hugged husband a little tighter than usual. Told him she loved him with all her heart. Then, she cried, again.

God used a little 4 yr old boy to help her with her grief. A little boy who has never met husband. A little boy who stood up and told my little girl, "Your daddy is sick."

Thank you Jesus for that.

Tuesday, April 10, 2012

OJT (On the Job Training)

Coming off of such a good and somewhat "normal" day on Sunday, I was not prepared for yesterday.

It was not a good day.

Husband woke up depressed. I tried to coax him out of it, giving little positive comments. Nothing worked. He finally went back to sleep for a few hours, leaving me to my thoughts.

While he was sleeping, Jack got home from school, so, I went to the pet store to get fish food for our fish. I told Jack I was leaving. When I got home, the house was locked up tighter than Fort Knox. The dogs were barking their heads off. I finally got in the house, husband was pacing in the foyer. He was very upset that I had left. Said he did not know where I had gone, so, he locked the house up. I told him where I had gone and explained that he was asleep, did not want to wake him up.

He was very confused as to how I got to the pet store. I told him I took the car. He thought Jack was still at school. Boy, what a mess.

I also stopped at Sonic to get him a coke. Handed him the coke. He asked me how I got to Sonic, did I walk? Once again, (sigh) I had to explain to him that Jack came home from school, so I took the car to get the fish food and surprise him with a coke. Mass confusion.

I asked Jack how come he did not check on his dad, he said he did, he was asleep, so, he went to his room and put his head phones on.

I was rattled the rest of the afternoon and evening. All I could think about was his state of mind when he woke up to find me gone. His thinking process is damaged now, so the thought of going to Jack's room to see if he was home would not enter his mind. All he knew was that I was gone. What was going through his poor mind? How scared he must have been. How helpless he must have felt.

I don't know what today will bring. Will he be in his own world? Will he be "with it?" I have to be honest, it's easier when he is in his own world, as he is oblivious to what is going on. When he is "with it", he is more aware of what's happening to him and, will have panic attacks.

I have learned another lesson. I don't have to spend thousands of dollars on college to learn what I'm learning now. There is no "school" or secondary education for what I've learned or am still learning from this nightmare. It's what I call On The Job Training.

Monday, April 9, 2012

How do you say Vanilla Wafers?

We had a lovely Easter. Of course, church service was great. The music, the people, the message. Of course, it was all about Christ rising, but, got to my heart.

We visited with our good friends from church, Doug & Jackie. Doug is coming this week to build a ramp for husband so he can use his scooter chair to get out of the house. I certainly can't lift that thing to get it out. Husband is looking forward to moving about on his own.

Husband fought me just as we were leaving for church. Said he saw no reason why he should have to use a wheelchair just to go to church. I ignored him, helped him in the car and off we went. Once I got him settled in the push wheelchair, he made a joke about me being his driver. I then said that yes, I was his driver and he better behave or else I would dump him off somewhere. We had a good laugh. And that was the end of the argument on why he should or should not be in a wheelchair.

During service, he grabbed a hold of my hand and just held it. Touching moment. When we stood for singing, I told him he did not need to stand. He got up anyway. Stood for about 10 seconds, then sat back down. I looked at him, he looked at me, then hung his head. I put my arm around him as he sat and I stood.

Dinner was delicious. I made lemon bars for the first time. Everyone loved them. I took my dear old friend, Jane, Easter dinner. She appreciated that.

The weather was beautiful. Doors and windows open, all day long.

I can honestly say it was a rather nice day, yesterday. No sudden mass confusion, no falling, no sleeping all day, no yelling out to no one. The only thing that if I wanted to put a damper on our day, was, husband could not pronounce Vanilla Wafers. That's it.

These days don't happen often. In fact, just the opposite. So, with yesterday gone, I have the memories of Easter Sunday 2012. I shall mark this day as Good.

Thank you, ever faithful Lord & Savior.

Sunday, April 8, 2012

Happy Easter

Easter Sunday. I hope each and every one of you have a Blessed Day.

We will go to church.

Husband is doing OK. Seems more quiet than usual, but other than that, OK. He has not fought me on the wheelchair issue. I can see the fight gone out of him. He doesn't argue with me anymore. The confusion is constant now. Gone are the days when he would be "with it". He lives in his own world now. He can still be mean at times, but, that is to be expected. He can be very sarcastic to me if I suggest something, but, for the most part, he is in his own world now.

Husband is obsessed with what day of the week it is. He always thinks it's Sunday. When I tell him it's say, Tuesday, he always says, "Oh, I thought it was Sunday." Always Sunday in his mind.

The questions used to bother me, but, now I just go with it. There are questions from the moment he wakes, until he goes back to sleep. When he wakes in the afternoon, the questions begin again. All day, every day.

From just one week ago to yesterday, his legs have virtually become completely stiff. They are hard for him to bend to put his shoes on. He uses the walker to go to the bathroom now. No longer does he attempt to walk holding onto the walls.

His appetite has changed. He does not eat much. I make sure he gets plenty of fluids. As far as eating, he has a good breakfast, no lunch, then, a small dinner. He does not snack.

When we go somewhere, I can see the confusion on his face. The look on his face says that he has absolutely no idea where we are. Except when we go into his Dad's neighborhood. There is a flicker of recognition. Other than that, nothing. When we get to our house, he will say, "Oh, already home? I thought it was further away."

Words are hard for him to form. He will mumble a lot. At first, when this started happening, I thought I just couldn't hear well. He cannot remember how to form words, therefore, he will mumble. When I quote him, I make it like he said it loud and clear. It's not that way in person.

If I am in the bathroom and we are the only two in the house and the phone rings, he goes into panic mode. He doesn't know how to use the phone anymore. When he was at his dad's the other day, I called. As father in law was handing him the phone, I could hear him coaxing husband, saying, "The phone is on, just put it to your ear." He will look at you completely confused.

So, there you have it. Update on husband and the monster. This is where we are at today. Easter Sunday, 2012.

Once again, I wish you all a Blessed Easter. He is Risen!!

Saturday, April 7, 2012


Blogging can be challenging at times. Kind of like writing a book. I have, at times, come here to post and have nothing to post about. It's like a writers block. I will close my laptop, unload the dishwasher, then, it will hit me on what to post. I like to post about a lot of things. I have opened up to the blogging world, invited everyone into my home, my life, my heart.

My mother always told me that with my interesting life, I should write a book. Never had time, too busy raising a large family. Who knows how to write a book?, I would think. Certainly not me. Writing a book would be hard to do, I would think. This may not be a leather bound book, but, it's a book all the same.

I'm a big, big fan of the TV show Survivor. Have watched it since day one. In this show, they have challenges. These challenges leave the contestants exhausted, sweaty and at times, injured. I often think of myself on the game Survivor. However, that is where I stop. In the end, someone wins 1 million dollars. No one is going to hand me a check, made out in my name, for 1 million dollars at the end of my "game".

At the end of this "game", there will be no big TV Season Finale. There will be no celebration. The motto of the TV show Survivor is Outwit, Outlast, Outplay.

I can honestly say, at my end, I will have Outwitted, Outlasted and Outplayed this game of Early Onset Familial Alzeiemer's Disease.


Friday, April 6, 2012

You've cone a long way, baby

Survived my first order with a Medical Supply Store. I had called Humana/Medicare to ask if they would pay for a lift to be installed on my car for husband's chair. Unfortunately, they do not. But, said they would pay for a wheel chair. Was unaware that you need a prescription for said wheelchair. So, I learned how to order, what steps to take and, now that we're in the system, next time will be easy enough. The wheelchair will be delivered today.

I have learned that when you need to contact someone in the medical field, always, always tell them you've never had the "opportunity" to be in this situation, please bear with me, I have questions. In my case, it has opened doors for me and I have learned a lot.

When your spouse (or any loved one) is dealing with a terminal illness, the surviving family member suddenly becomes chief cook and bottle washer. Everything is put on that person. Everything.

What I have learned in the past 2 years, is incredible. I surprise myself at times. It feels good to accomplish things I never thought I would have to face.

After everyone had gone to bed last night I got to thinking over the past few years. What we have faced and what we are facing now. It all started with searching on the internet. Then, it was to our primary Dr. Next stop was Neurology. A battery of tests lasting 4 months. The day I will never forget, Diagnosis Day. And, just 2 weeks ago, Genetic Test Results.

It's been quite a journey these last few years. We have our answers, we have a diagnosis. We now live with this hovering over our heads. I wish things were different. I wish I was wrong about all these signs and symptoms. I wish he wasn't going to die.

I've come a long way. If you were to tell me 5 years ago what I'd be facing now, why, I would put myself into a corner and turn inward. Funny how life is though. The sun comes up and goes down the same way it did before this nightmare began. Life goes on. I now live a different life. I deal with life & death each and every day. I watch as my husband slowly looses his life. I will experience my youngest child leave the nest in September. He will, in all likelihood, never see his dad alive again, once he leaves.

When this is over with and I am left to deal without a husband, the sun will come up and go down same way it has has done for thousand of years.

Thursday, April 5, 2012

Familiar Feelings

We got husband's chair yesterday. It's not a scooter, but one of those wheel chairs that go places. I think they call it the Hover Round? Whatever the name, it is wonderful. Husband will use it in the house. I cannot lift it, way too heavy. I have to find a place that will install something on the back of my car so I can transport it. Trouble is, I don't have that kind of money to pay for it. Will have to let God work in that area. It would be so nice to have it with us when we do go places. No more walking for husband.

Husband has been in good spirits. I thought he would be upset by another change, but, he has seemed to accept it. I honestly think that once his dad came around, he too came around.

There was a lot of seizure activity in the night. Hard for me to sleep. There were a few days last week that he slept OK. No seizures to speak of. Now, all of a sudden, they have come back stronger than before. Oh, how I hate this. His body is being ravaged by these seizures.

I showed father in law the genetic test results. He read it, gave it back to me and said, "I can't read anymore. I don't want to see anymore. And I have to accept it. I'm just too sad right now."

Last night I had this feeling. It was a familiar feeling. I have had it for over 2 years now. Then, it suddenly dawned on me what it is.

It's the feeling of a broken heart.

Wednesday, April 4, 2012

A new ride

My father in law, who has been in denial for over two years, purchased a used electric scooter for husband yesterday. We may have to buy a battery for it, but, otherwise, it's is perfect condition. Of course, I don't know if we can use it when we go out, it may be too heavy for me to lift. I may look into getting a lift and stand for it, for my car. I see them on other cars, but, just don't know how expensive it can cost.

That was a loving gesture. He has done a turn around. Something I had always wanted. We are getting closer, which is nice. I know he is hurting. My heart goes out to him.

And, this scooter couldn't have come at a better time. Like I said previously, husband legs are practically nothing now. No movement, no bending.

Husband is excited about this scooter. Happy even. We pick it up this morning.

I woke in the night to find husband having a seizure. It lasted longer than normal. I laid there, counting the seconds. It lasted for about 45 seconds. Longest one to date. The others would last only about 5 seconds. I hate waking up in the middle of the night and experiencing husband having a seizure. It's dark, everyone is sleeping, so quiet in the house and to witness this, well, it's scary.

Husband seems OK this morning. Tired looking, a little drawn, but OK.

Off we go to get his "new ride", as Jack named it. What a loving gesture by his dad. Husband is happy about it. Who can complain?

Tuesday, April 3, 2012

The Flip Side

While most of my days are not so funny, there is always a flip side to anything. Take for instance, Saturday.

As I said earlier, on Saturday morning, after we got back from Wal Mart, husband went to bed. I was doing the heavy cleaning.

Pat & Christine had given me some pretty artificial trees when we moved in here. They may be artificial, but they look so real. They had been in their garage for a few months. The dust on them was bothering me, so I had the bright idea to put the one in the living room in my shower to rinse off the dust. It worked beautifully. I stood the tree in the bathroom to dry and finish my cleaning.

A few hours later husband woke up. When he came into the living room, he had a funny look on his face. I asked him what was wrong, he said, "There's a tree in the bathroom. Why is there a tree in the bathroom?" At first, I thought he was hallucinating, then it dawned on me. I had left the tree to dry in the bathroom. Poor guy, that almost did him in.

I had to laugh, he finally laughed. Kristen came home and I asked her to get the tree from the bathroom. She looked at me as if I had lost my mind and said, "Go get the tree is the bathroom? Yeah, right Mom. Do you need a break?"

Rule Number One: Never, ever leave tree in bathroom with an Alzheimers husband. Why, you'll scare the you know what out of them!!

Monday, April 2, 2012

The Chosen

Church was wonderful yesterday. The message Pastor gave had me spellbound. It was so powerful. Our message was about Christ's last few days here on earth. Right up to the end when, as Pastor said, "He took his last breath and died." The sadness I felt for all His suffering. Tears rolled down my face. I was so moved by Pastor and his message.

As we were walking out to the car, husband said, "Wow, that message was good." He not only remembered the message, but, understood it as well. How Great Thou Art.

The rest of our day was spent quietly, at home. I watched an old movie on TV. Husband rested on the bed.

Husband's memory and confusion are a constant reminder of just how gravely ill he is. His legs are almost completely stiff now. He has lost control of his legs. They don't move at all. Just a shuffle, labored shuffle. I have to get him in a wheel chair. But first, I have to get him convinced he needs to be in a wheel chair. That's the difficult part. I looked at his legs last night. They are very thin, almost look like sticks now. It's not pretty.

There have also been loss of bodily functions. It's a daily problem now. I offered some Depends, but, he said no. Will wait until he's ready. Wanted to let him know I have them. He seemed surprised that I had them, stashed in the closet. I said, "Well, just in case, we have them." He seemed satisfied, for now.

Every morning, I take stock of where we are now. Every morning, I make a decision. Some are good decisions, some, not so good. Like offering your husband Adult Diapers. How fun is that?

This journey is hard. I wouldn't recommend it to anyone. It's also what God has chosen for me. I have to walk it, I have to live it. Remembering that God chose me for this, has made me more humble. He knows I can do it. I am chosen. I hope to make my Lord and Savior proud.

Sunday, April 1, 2012

Questions for My Lord

April 1st today. Where did March go? Actually, I don't know where this year has gone. Time is going by so fast. Too fast, I think.

Husband is doing so-so. The more lucid moments are fleeting now. He seems to be in his own world most of the time now. Pleasant (mostly), but, not there.

He wanted to go to Wal-Mart yesterday. I had a lot to do in the house, but, took him anyway. When we got home, he said, "I have to lay down. I can't go on." He slept for 3 hours. When he woke up, he was very confused, not really saying much, just continued to lay on the bed and stare. He was quiet. After awhile, he came around and was able to eat a good dinner.

Around 6:30, he went outside in the back. We have a sliding door leading off of the living room into the back yard. The dogs went with him. After about 10 minutes or so, I glanced out the sliding door to see what he was doing. He was sitting on the bench near the patio. Snowball was on his lap. He was just staring at nothing, petting little Snowball. He looked so sad and pitiful, sitting there. I choked a little, looking at him.

He came in and I noticed him having a lot of tremors. I suggested he take a nice hot shower, then, relax. When he came out of the shower, he told me he forgot to use the shower seat, "but, I didn't fall or anything," he said.

We usually like to go to church on Saturday evenings. Since we've moved, I just can't seem to get it together to go on Sat night. So, we will go to the 11:15 AM service today. Always, when I come home from church, I feel so refreshed, ready for a new week. Ready for anything. "I can do this," I always think, driving home from church. By the middle of the week, I find myself saying a silent prayer of "Help us Lord."

We have no more Dr appointments until his EEG in May. We see Dr A in July. Dr A explained why we go every 6 months. He wants to see how the disease is progressing, judging how much time husband has left.

Husband just woke up and said he had a nightmare. Had to get out of bed, he said. He is starting in on the questions. We go through this every morning. Questions that don't make sense to me, but, questions just the same. It always starts out like this. The questions seem to ease off by mid morning. By then, he is asleep again.

Questions. I have my own questions, however, I don't speak them out loud. These questions rattle in my head, all day long. My questions cannot be answered, at least not in this life. One day I will have my answers. When I go before My Lord, I will ask Him. He has all the answers.

The first thing I will ask is, "Why?"