Husband's last camping trip

Husband's last camping trip

Thursday, December 29, 2011

What now?

Husband continues a slow but steady decline. I've noticed it a lot the past few days. He doesn't seem agitated, just falling deeper and deeper into the world of Dementia. We have laughed, joked and talked a lot. But, there is no recollection later on. I started to take stock last night. Thinking back to the last few days. We saw an old friend on Tuesday. She looks exactly the same as 20 years ago. Husband did not recognize her. Said she had changed drastically. I could've picked her out of a crowd, that's how much she has not changed. I didn't say anything to husband. Pat's boys came for the holiday. He couldn't remember Byron's name. He asked me what is the due date for our car insurance. I told him. Then, he asked me again and again and again. He has asked me each day what day is it. I tell him throughout the day. He is rather pleasant, does not seem agitated or confused, just seems to have drifted to the "other side". I don't know if he'll come out of it. Will he snap back? Probably. This time, though, is different. He is so calm, almost, too calm. He has been fixated on buying a mobile home. Said we could do it. I calmly explained to him we have no money to buy a mobile home. He looked so wounded, like a child. Continues to talk about buying a mobile home. Wants to go look at mobile homes. Asks me every day, "Can we go look at mobile homes?" I don't like telling him no, but, he doesn't understand anymore about money and finances. He just looks so sad, then shuffles away. That's sad. I am dealing with it OK. Proud of the way I have been reacting to this decline. I take it all in stride. Can't do anything about it, so I just go with it. Have no choice anyway, but to deal with it. I am glad to see 2011 end. 2011 has not been kind to me. I don't know what 2012 will bring, but just want to get this year over with. Onto a new year.

Wednesday, December 28, 2011

Horrible Bosses

Do you ever wake up and wonder? Just wonder? I do. Some mornings I wonder about all the what if's, what was and what will be. I wonder how I got here, I wonder if I am doing the right thing, I wonder if I am heading in the right direction; I wonder about a lot of things.

I worked with a woman who went to church and said she was a Christian. She and her husband owned the company I worked for. She was one of the sweetest bosses I had had so far.

One day, while talking with a co-worker I mentioned that I thought S was a great person, sweet, just the greatest boss ever. She looked at me like I was nuts. She then informed me that one day, S would turn on me. She said she has worked for S on and off for the last 10 years. She had witnessed S in action. I didn't believe her. I soon drew away from this co-worker as I thought she had a bad case of bitters.

To make a long story short, S began to show her true colors. She fired some people who did not deserve to be fired. She would cut hours, mostly the girls in the office. Some of these girls were single parents, relying on their paychecks to support their families. The first time she turned on me was when I got invited out to lunch by my son. I covered for the Receptionist when she went to lunch, but, had asked her to go at a later lunch so I could have time with my son. The receptionist said OK, so, off I went to lunch.

When I returned, the receptionist was gone, the phones were ringing off the hook. When the receptionist got back, I asked her why she didn't wait for me to get back. She shrugged her shoulders, said she got hungry so she left.

The next morning, S came into my office and blasted me for going to lunch the day before. I tried explaining that I had made arrangements with the receptionist, but, she left before I got back. There was no explaining anything to her. This lady was on fire.

Soon after, I got an offer to go work for one of our competitors. I accepted. When I informed S of this, she said, "That's great. Your time is about up here anyway, it was time for you to leave." What????

A few weeks after I left, she fired one of the other girls who was a single parent. There was no reason to fire her, she was an excellent worker. Her excuse? Said she talked too loud, but she wouldn't fight her unemployment. That was big of her.

So, I wonder. I wonder what makes people the way they are? Does she ask for forgiveness when she does these awful things to people? Does she feel remorse for ruining other people's lives? If I was that kind of person, I don't think I could sleep at night. Sometimes I imagine seeing her in the store. What would I say to her? How would I act? Could I just walk by and not say anything? Or, would I tell her what I really think of her? How can she go to church? Does she act like a wonderful, sweet person at church? She may be a Christian. Not for me to judge.

I have a lot on my plate. Not only financial worries, but, this horrible disease my husband is suffering from. I just couldn't be hurtful to anyone. I just couldn't. Did something happen to her that made her the heartless person she is? I often think of her when I am most down. I would never, ever, want to turn into someone like her. That's scary.

I'd like to think God had me work there, knowing I would be going through all of this in a few years. He showed me what not to do when the going gets bad, really bad, like it is now. No, I will never be like S. To feel this kind of hurt I feel everyday? No, I would never want anyone to feel this.

Gee, I'm glad I'm me.

Monday, December 26, 2011

Not forsaken

Christmas was different than I had expected. I enjoyed myself, thankful for everything. The food was delicious, the family great. All in all, I can honestly say I enjoyed myself. My heart was warm.

As we sat eating our Christmas dinner, I looked around at my family. I looked at my children. When did they get so grown? I looked at husband. He was in and out of reality yesterday, but ate a good dinner. I checked on him throughout the day. "The look" is back, but, he laughed and smiled a lot. He mostly sat in his chair in the living room. He gets embarrassed around other people at times because he cannot walk unassisted anymore. He doesn't like people to see him this way. So, he sat all day.

After everyone had gone home, husband went to bed. I sat up for awhile and the thoughts crept into my mind. I wondered where I will be next year this time. Will I be a Widow? Will he really be gone? Will I look back on this Christmas and wonder if I made him happy on this, his last Christmas? Where will I be? Here? Will I be happy? Oh, the thoughts. Can't help thinking.

Jack leaves for Arizona today. A whole week he gets to be a kid again. He is beyond excited. I am excited for him.

So, the Holidays are over with, for the most part. News Years Eve is approaching. I will probably do the same thing I did last night. Think. Shouldn't do that, not good for me. I will make the coming year the best husband will know, or, remember. I will find a smaller, cheaper house for us. After that, I will settle into the here and now, and, prepare myself for what is to come.

This past week has been a wonderment to me. I have opened my eyes, really opened my eyes to God and the love He has for me. As I go into a new year, He will not forsake me. He will comfort me. He will watch over me.

I know He will, because He said so.

Sunday, December 25, 2011

A Baby Story

Over 2,000 years ago, in a small town, a baby was born. He was placed in a manger, his momma wrapped him in swaddling clothes.

We don't know how long his momma was in labor with him. We don't know how much he weighed, don't know how long he was. We don't know if he had hair or not.

But, a baby nonetheless. This baby they called Jesus, or, Emmanuel. He was the King of Kings, the Lord of Lords'. He was God in the flesh. He came to die, so we might live.

We all know the story.

Last night, at Christmas Eve services, it hit me, really hit me. Christmas Eve services rocked the house. It was fantastic. The reality of it all.

My heart today is full. As I enter into a new year, one faced with uncertainty, with the impending death of my husband, where will I live, how will I live, will my kids be OK, will I be OK, there is one thing for sure.

Jesus loves me just the way I am, Jesus protects me, Jesus surrounds me with His love, even in my darkest hour. He is my salvation.

Happy Birthday, Jesus. I celebrate your birth with joy in my heart.

Saturday, December 24, 2011

Christmas Magic

Christmas Eve.

When I was a little girl, Christmas Eve was more magical then Christmas. It was the anticipation of it all. The smells coming from the kitchen. The tree, the lights. My dad, always the "funny guy", trying to convince me I hadn't been that good all year.

My mother always made Minced Meat and Pumpkin pies. Every single year. I do not care for pumpkin anything, and detest minced meat. I can remember begging her to make an apple pie, every year. She would always tell me no, my father liked these kind of pies, everyone did, then she would proceed to tell me that there was something wrong with me. She would say, "Everyone loves pumpkin pie, why don't you?"

When I was about 14, my older sister married. Her new husband loved apple pie. She made apple pie for him at Christmas. Huh, funny how those memories seem to seep into my mind. My mom made the best apple pies. I make mine like hers. My family will not settle for any store bought pie, no sir, it's gotta be my homemade apple pies.

Every time I make an apple pie, I think of my mother.

Going to bed on Christmas Eve was so hard for me. Then, when I woke up on Christmas morning, I had to wait for my dad to get his first cup of coffee. He would tell me he was tired, Santa had woken him up. He always acted grumpy, complaining about Santa. He told me one time that he made coffee for Santa and, together, the two of them sat in the kitchen having coffee. I was entranced by that.

All too soon, the magic was over. The presents were unwrapped, it was time to clean up the mess. But, wait, there was the magic of my mothers' Christmas dinner. Except for those pies.

I wanted my children to feel the magic I felt as a child on Christmas Eve. I believe I did. I remember one year when they were little. As I put them to bed, fresh clean pajamas, all warm from their bath, shiny clean hair, I tucked Tish into bed, she said, "Oh mommy, how can I sleep?"

My children know the real meaning of Christmas though. They know the story of Christ, our King being born. Today, as most of them are grown now, will tell their children that it's not the amount of gifts you get, it's Our Savior's Birth. They get it, they know it, they believe it.

Today, I will think back to my childhood and the magic I felt. I will bake pies. I will prepare the sweet potatoes. We will go to church for Christmas Eve Services. I will thank my Lord and Savior for giving me back me this week. For giving us laughter this week. This week has been unforgettable. Filled with blessings.

Filled with the magic of Christmas.

Friday, December 23, 2011

Best Christmas ever!!

Woke up to a Winter Wonderland this morning. It is beautiful, but, cold. Roads are closed. Christmas tree lights are on. There are presents under our tree now. It looks magical to me. The bread is drying in brown paper bags for my stuffing on the kitchen table. It smells like Christmas in my house now.

I make my stuffing the old fashioned way. I buy the cheapest white bread. I tear each slice into bite sized pieces into the brown sacks. I season the bread while drying. My husband & children will not eat anyone's stuffing but mine. My daughter in law will not allow anyone to make the stuffing but me. Patrick wanted to this year. Christine put a stop to all that nonsense.

As I was tearing my bread yesterday afternoon, the doorbell rang. Snowball, the little, younger dog has not learned that you do not eat Mama's bread for her stuffing. Why, it's criminal!! Just ask Bessie. Now, not only does my doorbell NOT ring very much, but, my dogs GO NUTS when it does. I'm off to the front door, going as fast as I can, as the dogs are racing me. There is a man standing there with a beautiful Christmas centerpiece. For us!!! Us!!! This poor deliveryman is trying to tell me it's a live centerpiece, it needs water everyday, he has watered it already. He looks nervous. I reassure him the dogs will not bite, they are just crazy. All the while, my dogs are acting like they are rabid. (Relax, they're not).

I am so excited, I take it to the kitchen table. Husband asks who it's from, I have him in my way as I'm trying to set it on the table. The phone rings, I set the plant down, run for the phone. Now, the older, bigger dog, Bessie? She goes crazy when the phone rings. I don't know why. So, I'm tripping over the dog, answer the phone. It's Patrick. I'm saying Hi, then I glance into the living room, and there he is. The little dog, Snowball. With a piece of bread in his mouth!! Bessie is sitting up, right next to the bread, looking at me as if to say, "Not me, he did it". I screamed, "SNOWBALL". That dog spit out the bread, looked at Bessie, Bessie looked at me as if to say, "kids".

And, Me? I laughed, again. Husband? He laughed, again. We laughed together, again. Oh, the joy of laughter in my home again.

God has put laughter in my house again. Even if it is for only a little while, it's laughter just the same. Kristen said yesterday, "This is the best Christmas, ever". Yes, my daughter, it is.

Thursday, December 22, 2011

Laughter, the Best Medicine

God continues to warm my heart. God continues to give me a little something each day to smile about. He has allowed me to laugh, really laugh this week. God has shown me love this week. God has proven to me that He is carrying me through this journey. God is real.

Yesterday morning, I was doing the breakfast dishes. Husband was in the front bathroom, using Jacks' electric shaver, shaving. (Jack doesn't use it but once a month)

Husband comes in the kitchen and announces he has just given himself a hair cut. My back was to him, loading the dishwasher. I said, "Yeah, right". He says, "No, look how good it looks". I turned around, and lo and behold, he HAD given himself a haircut. Oh dear.

He had bald spots in some areas, not shaved in other spots. Big chunks of his hair was gone. He had chunks of hair hanging from his neck, dropping to the floor. As these chunks dropped, the dogs, thinking it was some kind of food, started to eat the hair. Realizing it was hair, they both started to choke and cough. Spitting out the hair, they each gave ME a dirty look as if I had tricked them.

There, in all his glory, stood my husband. He had on his boxer shorts, no shirt, socks, with this look of, "See what I did?" look. He looked so proud.

I had errands to run. I told him I would fix it when I got home. He said there was nothing to fix. I was trying my best not to belt out laughing, but, I saw something again. Another sparkle in his eyes. We both busted out laughing.

Kristen got up, I showed her what he had done, both of us still laughing. She took one look at him and all she could say was, "Oh Daddy". She tried fixing it. I will shave him bald today.

Father in law came to visit yesterday. He was here when I got home from my errands. He took me aside, and, being very serious said, "You need to fix his head". I looked at husband, then back at his dad. We both started laughing again. My poor Father in law. He didn't get it. As he left, he looked at us as if we were nuts. Well????

I have learned this week, I am still me. I thought I had lost myself last week. I thought God had forsaken me. I felt so alone last week. I was angry. And I prayed. A simple prayer. I asked Him to help me. Show me He was still there. Warm my heart.

Since then, my God has provided us with an abundance of food. Love. Warmth. And the best ever? Humor.

Wednesday, December 21, 2011

The Gift

I witnessed something yesterday one would only see in the movies. This movie would be gut wrenching, take your Kleenex to the Movies night, kind of movie. It would also consist of a pure love for one's child, a final gesture, and a love from a child to his Dad.

It was quiet in my house yesterday afternoon. I was resting on the couch and heard some rustling coming from my bedroom. I heard talking, low and soft. It went on for some time.

Finally, after about 30 minutes, I got up and started down the hallway. As I got nearer to the bedroom, I realized Jack & husband were in the room. I glanced in the bedroom. Something told me not to interrupt.

Husband was sitting on the floor, next to his bedside table. Jack was sitting on the bed, looking down at his dad. Husband was handing something to Jack. And then I saw it. It was a watch husband has had for 25 years. The battery was dead, husband has not worn this watch in over 20 years. His father had given it to him.

He was telling Jack he wanted him to have the watch now. He told him, "Remember me when you wear this". Jack sat nodding his head, not even trying to be sarcastic. He looked serious. He didn't look like he was going to cry, just looked really, really serious. He was listening to his dad. Husband told him he would not be here next Christmas, so he wanted to give it to him now. Jack again, nodded his head.

I had to leave. I came out to the living room, trying to catch my breath. They didn't know I had witnessed this Father & Son exchange. It was between them. A final gesture from husband to his child.

I went to start dinner. Jack came out to the kitchen. He looked so serious, and said, "Mom, dad gave me his watch. Look. It doesn't work, but he said he wants me to have it. Mom, he said he won't be here next year. I like it, it's nice, huh mom?"

Soon after, Jack took the watch off. Later, Pat & Christine stopped by. They invited Jack to spend the night. As he was leaving, I noticed something on his wrist.

He was wearing The Watch.

Tuesday, December 20, 2011

Answered Prayer

Well, we got our snow,,,,,and ice. Snow is OK, ice, not so OK. The scary part is at times, you don't even know you've hit a patch of ice, until, well, you get the picture. What did look pretty last night was the snow falling, the Christmas lights down my street reflecting the lights on the fallen snow. Looked kind of magical. Really pretty.

I got a special message on Facebook from my cousin. She is so sweet. She too has suffered tragedy with the loss of her son. But she wanted to make sure I was OK. So, my prayer got answered, it warmed my heart.

We also had "Santa" visit last evening. Our Couples Group from church came by with presents for us. They also brought a freshly smoked ham. There are presents under our otherwise empty tree now.

Thank you Sweet Jesus.

I was humbled and heartfelt at the same time. As I was looking at my friends, I suddenly got an old feeling, something I haven't felt in a long time. My heart felt warm. These people love us, they really, really love us. Their faces were glowing. They were so happy to be in my home. They were so happy to give us a Christmas.

Today, my heart feels warm. I am not dreading Christmas. Oh, don't get me wrong, I want it to be over, but now, I say to myself, "You can do this".

When our friends were over last night, I glanced at husband. His eyes were sparkly. I saw life in them. His face looked so happy. OK, OK, I'm going to say it. The miracle of Christmas. There. Said it. For the first time in a long time, I saw life in my husbands' eyes.

And my heart is warm. And I am thankful. And I am blessed. Jesus answered my prayer.

Monday, December 19, 2011

For Christmas, I'd like a warm heart, please.

Beginning to feel like me again. Took it very easy yesterday. I'm getting better, just taking it's sweet time.

We are supposed to have blizzard like weather today. It is raining, mixed with snow. I do have to go out, so, let's hope it waits til I get home. Not comfortable driving in this kind of weather.

Husband is about the same. Confusion abounds. Total confusion. Not retaining anything. "The look" haunts me. I do not like to look at his face anymore. It's the face of a stranger. He doesn't look the same. He's gone, really gone. Another reality slap. He does however, seem more comfortable now that I'm on the road to recovery.

One week to go and I can breathe easier. I have never dreaded Christmas the way I do this year. Reading other Blogs as I do, the holidays in those houses are happy, filled with cheer, looking forward to the new year. My new year will probably consist of the death of my husband and the loss my children and I will have. So, no, I just don't have it in me. I smile when out and about, faking it all the way. But, when I come here each morning, my heart speaks.

I am however, looking forward to Christmas dinner. The kids, or most of them will be here. I love cooking for my family. It will be bright and cheery.

The day after Christmas, Jack flies to Arizona. For his Christmas gift, Tish & Jace bought him a ticket. He will spend one week with them. He is looking forward to that. I know he will have a great time. I am excited for him. I hope he comes back refreshed.

So, onto a new day. It does look cozy in my house. The grey skies, the rain mixed with snow outside, the lights on the Christmas tree, I like that. It is warm in my house, freezing outside. I just wish the warmness would warm my heart. Today, my prayers will be for God to warm my heart. I hate feeling this way. I want to be happy like everyone else.

Today, for the first time, I am going to ask, "Why"?

Sunday, December 18, 2011

Sick days

I got a vacation Friday & Saturday. I got sick. Really sick. Slept most of the day Friday, in fact, I lost all of Friday. Yesterday was better, but still spent in bed. Today I will venture out of the bedroom, and try to stay on the couch. I feel much better, just weak. Have to build my strength back up. I had no business getting sick. Shame on me.

Kristen said on Friday, husband got so scared that I was sick and sleeping so much, he curled into the fetal position and slept all afternoon. She said she didn't know who to be scared more for. I don't usually get sick, but sure made up for it this time.

Yesterday was better. Husband seemed more relaxed. He and Jack watched movies in the living room. His concentration seemed out of whack. Kept asking me if I was going grocery shopping. I had sent Kristen to the grocery store. She got all the groceries. I kept telling him that I could not go. He seemed mad that I couldn't go get the groceries. But, once she got home and there were special things for him, he seemed OK. He did however want muffins from Costco, and having to explain to him that Kristen was not a member, she could not use my card without me being there, well, he still does not understand why she didn't get "his muffins".

"The look" is back. I think it's been there for a few days. I know it was there on Thursday, before getting sick, and it's there this morning.

Oh, I hate when "the look" comes on. It means I repeat myself over and over. He will go around making no sense of anything today. It means I will get frustrated. He wants to visit his dad today. Jack will take him. I will get some relief from that.

On a sad note, Susie did lose the baby. It was a tubal pregnancy. It got rough for her. I felt so bad for her. I cried with her. Her heart just broke. Her first baby. What a time to lose a baby, around the holidays. Then, husband being the way he is. And people wonder why I just want to get the holidays over with?

I feel down today. It could be because I got sick. Whatever the reason, I feel down. Today I will rest more. Regaining my strength. Have to. Too many people depending on me.

Thursday, December 15, 2011


I come here early each morning. I usually have no idea what I'm going to say. I reflect on the day before, drawing from that. I reflect on my life so far. I reflect on my marriage and motherhood. And I reflect on the what is to be. As I start to type, the words flow from my fingers to the keyboard. The sign of a true writer? Don't know, but it's what I do.

Some days, words just do not come to me. So, I dig deep, looking for words from my heart. And then, like a dam bursting, the words come.

My blog is a diary of sorts. A journey I'm traveling on. On this blog, you will not see advertising, contests or "vote for me" sidebars. There are no pictures except for the one I captured on husbands' last camping trip in August of 2010. It may seem boring to some, but, this is my journey. A journey I want to share with others. A journey where I am learning more about myself each day. A journey that will not end well. Depressing? At times, yes. Heartfelt? All the time.

There are always "Seasons" in one's life. We are unique in our seasons. It is our own personal seasons. We travel different roads.

Someone asked me yesterday if I quit work last year sooner than maybe I should have. I agreed, but, said that the memories of this past year, when husband was more "with it", will be with me forever. That's what's important. Not a paycheck.

I am a Christian. I love Jesus more than myself. I trust in Him. He walks with me. He guides me. He comforts me. He surprises me when little "miracles" happen throughout my day. He loves me.

I will not become a bitter person. I am fighting this daily. I am starting counseling with a counselor at church. I need it. I feel bitterness swelling up. I feel anger building up. A lot of anger. I need to nip this in the bud. I will not become that kind of person.

I am not comfortable with the holidays this year. With Christmas fast approaching, I feel restless. Just get it over with, I say. If I am told "Merry Christmas", I always smile with a cheery "Merry Christmas" back atcha kind of reply. It is not heartfelt. I have to be honest. Not that I want them to not have a good Christmas, it's just not there for me, in my life, in my journey this year. It's me, not them. For my children's sake, I act excited for Christmas. For husband I act excited. Inside, there's this dread.

Last year this time, I wondered what it would be like this year. Would husband still be with us? Well, he's here. He's still alive. His body is still here, but, his mind is not here anymore. He goes in and out of reality. Some days being better than others.

My journey here on earth. My journey here in blogland. It may be boring to some. It may be depressing to some. It may upset some. It may seem bland to others.

But, it's My Journey.

Wednesday, December 14, 2011

A Letter and a lunch date

I got a letter from husbands' insurance company the other day. He has Medicare, but I got him full coverage through Humana. Together, what Medicare doesn't cover, Humana does. It's a great plan, with no cost to me. Another perk in being terminal.

In this letter, they notified me that husband had been approved for 6 visits of Physical Therapy, running through January 19th, 2012. Towards the end of this paragraph, and I will quote, they said, "Because there is no hope for recovery, we have denied the additional 6 weeks of Physical Therapy".

There it was. A Slap In Your Face kind of letter. Sorry, we don't want to pay for you for any additional length of time because you're going to die anyway.

I calmly put the letter away. Sat down on the couch and tried to absorb what they said. I live with this day in, day out, but, when you get a letter such as this, reality smacks you in the face.

Later, I told husband he was approved through January 19th. Since he has no concept of time anymore, it didn't compute. He nodded his head, said OK. I left it at that. No use in him being told the real reason.

I don't blame the insurance company. In fact, this is a good plan. I can see their point. I understand. It's just when you get a letter like that, to see it in black and white, well, it hurt my heart.

Husband goes to Physical Therapy this morning. I will have to let his Therapist know about "the letter". She will not be pleased. I will tell her to just let it go. He's going to die no matter what she does.

A friend from church invited me to lunch yesterday. It has been so long since I ate out. What a pleasant day I had. This new friend is a wonderful lady. We ate, talked and laughed. Such a simple lunch made my day. I felt myself relaxing, almost feeling like me again. I continued to feel good the rest of the day. Oh, that was nice.

So, here we are into Wednesday. On Monday, I got "The Letter". On Tuesday, I got invited out to lunch.

What will today bring?

Tuesday, December 13, 2011

Reaching out

I saw an old co-worker last night when I was out. When I first started working there, we did not get along. I had heard through the "gossip center" that she was a real pain. Me being me, believed these other people and thought she was a real pain. After awhile, I figured she was not the pain, the other people were.

I found her to be so sweet and true. Am happy to report we are still friends to this day. We hugged and she asked about husband. She did not know that husband was as ill as he is. Her eyes filled with tears as I told her. We have promised to keep in touch more, maybe a dinner and a movie. Let's hope we follow through.

My life has become isolated. My days are centered around husband, seizures, memory loss, stumbling, falling and feeling alone, really alone.

After seeing my friend, it got me thinking. Why do people suddenly lose contact with others when the going gets rough? This is the time when you need family and friends most. I would love to have a family member or friend call just to say "Hi, thinking of you". It would mean so much.

One day, somehow, someway, I will help someone. Someone who is feeling the way I am feeling right now. Alone. I will show that person they are often thought of. I will sacrifice a few minutes of my day to call them, just to say "hi". Trust me, it means so much to know that someone out there was thinking of you.

For people like us, who are going through one of the most horrific diseases, getting a phone call from family or friend makes us feel loved and thought of.

People are so busy nowadays. Personally, I think some use that as an excuse to not keep in contact. All it takes is 5 minutes out of a busy day to reach out to someone who could use a little lift.

Call someone. Reach out to someone. Especially this time of year. There are so many hurting out there. Whether it be financial, health or whatever. You'd be surprised how a phone call could give a person a lift they so desperately need. I know I would appreciate a phone call. Why, I would feel so special. Everyone needs to feel special sometimes.

Monday, December 12, 2011

Liar, Liar, pants on fire

I took husband over to his Dads' house yesterday after church. We had a very interesting conversation, his Dad and I. As I was leaving, he followed me to the door and told me that he did not think husband had Dementia. Said it was a spine injury. After I picked my jaw up, I told him no, husband has Dementia.

At first I felt sorry for him because I thought he was in denial. Then, he proceeds to tell me that husband told him the Dr's said it was a spinal injury causing his legs to not work anymore. Are you kidding me? I told him that husband had an MRI & a CT Scan, spine was normal, no sign of injury. He looked so confused, then said, "Well, if it's Dementia like what his mother had, he would be having seizures". Uh, duh?

I turned around and told him husband IS having seizures and is on medication for it. He is also hallucinating. That poor man's face. I then told him that husband had the Cognitive Testing and failed miserably. "He had the brain test?", he asks. "Yes", I say. "And he failed?" "Yes".

My father in law's face crumpled. I felt so bad for him. I crushed his world. I thought he knew. I don't communicate much with him but, he did go with us to the Dr before diagnosis to give a family history. I thought he knew. After all, take one look at husband and you KNOW something is wrong with his brain. He walks like a person who's had a severe brain injury. Father in law got very quiet. I think he was putting two and two together.

Seems husband has been telling him fibs about his real condition. Husband is still in denial and making his Dad believe there is not much wrong with him. I feel bad because maybe I should've been more in communication with him. I just thought husband had told him.

One day this week, I am going to father in laws house. I will give him the file I have on husband and let him read the diagnosis himself. This is so sad for all of us. I have to deliver the devastating news to his dad that his son is indeed dying. Great.

Now, thinking about it all, it makes sense. I wondered why his dad didn't come around much. I resented him for that. Why didn't he call much? He just didn't know. I felt such compassion for him last night. I felt so bad for him.

Shame on me for thinking husband had told him. I should've known better. Husband is still in denial when it comes to other people. He only talks about it with me. He only shares his fears with me. I am the only one he talks to about dying. Just me. Maybe his dad will come around more once he knows the truth. I hope so. I know he loves his son, I could see that yesterday. I am not going to ask husband why he didn't tell him. That would be like asking a 2 yr old why he made a mess. No answers.

I hate this, all of it.

Sunday, December 11, 2011

New Legs

Husband got his braces or Orthodics Friday. It does make a difference. His knees are no longer spastic when he walks in the braces. The braces are heavy, but, he is learning to pick up his feet now when he walks. There are hinges at the ankle, making his ankles move, thus, creating a more even walk. All in all, I am pleased with the results. Husband seems happy about all of this. Of course, his walking is still very labored, there just isn't a lot of spastic movements like before. His left arm however, now bows out, a little spastic looking. I don't know if it's because he is using it for balance or what, but I have noticed it since Friday. Strange. Need to check my brain and try to remember if he was doing that before.

I did not go and volunteer yesterday as planned. I tried moving our couch the other day and hurt my back. It has been hurting, yesterday being the worst. I took it easy yesterday, a little sore and stiff today. I have a Dr's appointment Wednesday. Have him check it out.

We had a pot luck Friday night with our Couples Group from church. It was fun. The food was delicious. I made a sweet potato casserole and stuffed eggs. This couples group has done wonders for both husband and I. The people in the group are so warm and loving. A lot of them are struggling financially as we are, although not to the extent as us, as the husbands' are healthy, but, struggling just the same. Some of them have lost their jobs after years of working at the same company, some have lost their business and have had to file bankruptcy. So, it's easy to feel at home with them. We connect. There is one couple who have not lost their jobs, but have a handicapped little girl. She had to have surgery in Salt Lake City last month. After arriving home a few days later, the woman lost her Mother. So, I am really not alone. Our circumstances may be different, but we are all suffering just the same. We come together as a group and hold one another up. I look forward to Friday nights now.

Husband continues to be OK. He had "visitors" last night. Was telling them he wanted to go with them. What is this? He actually sat up on the side of the bed and looked like he was reaching for clothes. I told him to lie back down. He looked confused at me, like he didn't know me at first, then got back into bed. He started talking quietly to the "visitors", but did not try to get out of bed again. Took me awhile to fall back to sleep.

Did not go to church last night. Off to church this morning. Husband looks forward to wearing his "new legs" at church. We should have a good day, today. Lord, bless us.

Friday, December 9, 2011

Braces & Presents

Husband is up early. Off to get his braces today. He is excited. I hope they help in his walking. I'll try anything short of putting him in a wheelchair.

Have to take Jack to school early, then, off to the hospital. I am hoping for positive results.

Found out Susie has not lost the baby. Seems she has cysts which is causing her pain. I am taking her in for blood test today to see where her HCG levels are. Please pray they have doubled. If they have, she did not miscarry. I talked with her last night, she is so scared. I hope my talk with her helped. I pray the baby was not lost.

Tomorrow, I am volunteering at church to deliver Christmas presents to poor families. It'll help me. I want to see joy on those little kids' faces. I want them to see the miracle of what Christmas really is. I want to give them hope.

Maybe, just maybe, if I see their little faces light up, it will give me hope in my own life. I would love to see husbands' face light up again. Only, there is no light left. At times, his eyes will have a small but distinct sparkle, but, then it's gone.

If I can't see life in husband, I will see it in precious children who would have no Christmas were it not for our church. I will smile and laugh with those children. I will pass out presents with joy and sadness in my heart. Joy, that I am able to at least pass out presents, and, sadness that my husband is dying and I am not able to do anything about that.

Thursday, December 8, 2011

A day in the life

Still holding steady here. I was gone most of the day yesterday. Husband had PT, it ran late, brought him home, rushed off to Bible Study, it ran late, then, off to an old friends'. She is a widow, in poor health, so I went over to help her out with some chores. I have to take her today to see an Orthopedic Specialist as she fractured her knee cap last week. We have been friends sine my Bank of America days. We started at the bank on the same day. Yesterday was busy. Not used to that anymore. It lets me forget for just a moment my life, and the horrors I live with.

Husband is still doing good. Has had a few slips here and there, but, all in all, it's still pleasant around here.

I made a nice dinner for us, it was almost like old times again. Jack in the kitchen with me as I cooked, telling me about his day at school, I loved it. I so wish it could be like that all the time.

I have decided not to further seeking employment at this time. I have had no response from anyone, and believe that it is not Gods' will I go back to work. My place is at home, financial struggle or not, I have to be here to care for husband. I could use the extra income, in fact, I need the extra income, however, I feel God is keeping me home for a reason. Hard pill to swallow when I run out of money by the 10th of the month, but, nonetheless, I will do what God wants me to do. He will somehow, someway, see me through these financial worries I have constantly on my mind.

I got some wonderful news last week. Tyler & Susie are expecting! She is about 4 weeks along. She works in Physical Therapy where I take husband. When husband was there yesterday, we sat and giggled and talked about the baby. They are so very excited and a much wanted baby is on the way. However, last night I got a call from them. They were on their way to the ER, Susie was in pain and bleeding. Tyler was asking me about her symptoms, did I ever experience it. I have ever had a miscarriage, so I wasn't much help. I told them I would pray for the safety of the baby. I prayed that the baby would be safe, but, sadly, I feel as if she lost it. I have not heard from Tyler, tried texting and calling late last night, no answer.

I got so sad about this. Just when I can have something to look forward to, a new baby in the family, a new life, it's gone. I know, I know, when these early miscarriages happen, it means something was wrong, but, it doesn't take away my sadness at the loss. I am still praying she did not loose the baby, but, I feel as if she did. I pray she will be able to deal with it.

The start of a new day.

Wednesday, December 7, 2011

All I want for Christmas.............................

I am still waiting for the other shoe to drop. The week has been pleasant. Husband has behaved. We had one moment Monday night.

I was watching TV in the living room. Husband comes out of the bedroom, no shoes, no jacket. Goes to the front door, steps outside. I ask "Where are you going?", as my heart begins to pound. He can barely walk at this point, mumbles something about the outside faucets freezing. He did something to the faucets, came back in and went to bed.

After that episode, I can happily report that he seems OK. When that happened with the faucets, I got that familiar feeling again. The "oh no" feeling. But, it came and went. He has been in a good mood.

Today is our regular weekly Physical Therapy. I don't see what good it's doing, but, it gets husband out of the house, I drop him off and have 1 whole hour to myself. Yay!!

He gets his braces, or, Orthodics as they like to call them nowadays, Friday. He told me last night that once he gets them, he feels he will be able to walk normal again. Who knows, maybe he will?

I am feeling better than I did last week. Even when I feel that there is no hope for us, there is a spark still left in me. It must come from God. After all, He really is my only hope. Not that I'm hoping for a cure for husband. There won't be. He is going to die, I know that. It's this dread I feel most of the time. A heaviness that won't go away.

I am trying to keep myself away from a dark place. It's hard, I have a permanent lump in my throat. It's there, always. But, I have to learn how to have that lump and still function. I am a work in progress. All I can do is make the best of each day. Sounds good on paper, but, I have to say, I try, I really try. Some days I'm successful, other days, not.

I am hoping for another good day. I am tired of all the crap that has been thrown into my path. I just want a normal life. Is that too much to ask for?

I have been thinking of going to see "Santa" at one of the malls. I imagine me getting on his lap and asking him, "Santa, can I please have a normal life?"

Monday, December 5, 2011

When ya coming back?

I think Jacks' prayers were answered. Or at least partially answered. We got another storm last night, alot of snow. So, at 5:30 AM, my cell phone is ringing and I, thinking it's the alarm, shut it off. Snuggled back down for a moment, then realized it was an incoming call. Checked my phone, missed call. Rang again, it was an automated message from the school saying all Albuquerque Public Schools are on a 2 hour delay. Usually when that happens, they eventually close the schools. We'll see. It's very cold with blowing snow. It's 21 degrees outside right now. Burr.

I had a pleasant weekend. Yes, you heard right. A pleasant weekend. Me. Surprise, surprise. I loved it! It felt so normal. It felt so right.

Pat called yesterday morning and invited us over for coffee and to see their new furniture. It's really beautiful. While we were there, he wanted us to have their Christmas tree. It's huge and they haven't used it for 3 years. They are usually not home for Christmas. They go up north to Christines' family. This year, they are going to be here, so thought we would want to use it.

It is so pretty. Pat helped set it up as they came for dinner. I am not in the Christmas spirit, but, with my rather pleasant weekend coupled with this beautiful tree, well, I'm OK.

I will savor this weekend. Think back to this weekend when the going gets rough again.

Husband was fine ALL weekend. The attempt at walking is very bad now, but, his mind was OK. Not clear and sharp, no, but, he seemed relaxed and stable.

This is the time however when you have to stop and pinch yourself. Is this for real, you ask yourself? Then, in an instant, it's all gone, replaced with a man who walks around in circles, mumbling, confused, angry, searching for things that do not exist and your heart breaks. Oh, yes, I always think, here it comes. Brace yourself.

For now though, hopefully through today, my house will be relatively normal. Oh, I hope so. I don't want the monster to come back, not yet, wait a minute, please. I want to savor this, remember this as never before. Relish in what was. Give husband some rest. Give us a break. Let us enjoy just a few days til Dementia decides to come back, destroying my husbands mind and body. Please.

Sunday, December 4, 2011

Dementia is on Vacay!!

Another very cold morning here in the Land of Enchantment. We are supposed to get blasted with another storm late today. If that happens, schools will more than likely be closed tomorrow. I can hear Jack praying as we speak!!

I talked to one of our Pastors from church yesterday. He shared with me that his dad had Frontal Lobe Dementia as well. Said that his mom went through some awful times like me. Said she's fine now, but, shared that she changed during her husbands' illness. So, in a nutshell, I'm normal when I say I'm changing. This disease has a way of challenging even the strongest of the strong. I walked away a little lighter. He is putting me in touch with a counselor. It will be one on one. No group sharing. I think I'll like that. Someone to talk to. I learned one thing yesterday: I'm normal!!! Everyone hear that? I'm normal. Whew.

Father in law is having some health issues. Seems his kidneys are failing, he may have to go on Dialysis. Husband was upset about that. Depressed. Quieter than usual. I told husband there is nothing we can do, but be there for him. Father in law remarried several years ago, so at least he has her. She's a nice enough person, a little self centered in my opinion, but, we get along great and I know that she will take good care of him.

The kids are going to put the christmas tree up today. I am going to force this holiday spirit out of me. Force it until I'm oozing with cheer. Figure if I do that, before I know it, the holidays will be over and I can get on with my life. Yep, that's what I'm gonna do.

On the Dementia side of things, no news is good news. Or is it? Husband continues to be stable. Mumbles alot lately, but other than that, seems like Dementia has taken a little vacay. Thanks, you monster. It'll be back, stronger than ever, mark my word. But, I'll take what I have for now, because when it hits again, it's always worse than the time before. More damage, more paranoia, more hallucinations, more falling, more confusion, oh, the list goes on.

I started cooking beef and barley soup yesterday. It smells wonderful in my house. I love to cook soup on a cold winter day. Good for the soul. Am making my homemade pineapple upside down cake as well. Tyler & Susie said they would be by. I promised Susie the cake. Hopefully, Pat & Christine will be by too. Love to cook for these daughter in laws of mine. They rave about my cooking. I love to see them eat my food. They go all gaga on me. Funny, sweet girls.

Here's to a good day. To all of you. When husband wakes up, I hope to see that Dementia is still out on vacay so we can all breathe easier as the smell of mom's cooking fills the house and the kids decorate the tree. One day, that's all I ask for, one day.

Saturday, December 3, 2011

Waiting to exhale

Not much news on the home front. Yesterday was rather boring. I'll take it. Weather has turned ugly. Very cold, woke up to snow this morning.

I am going to see one of the Pastors at church today. I need some guidance, prayer and just general help. I know he doesn't have all the answers I need, but at least it's someone to talk to. I am concerned about me, what I'm feeling, where I'm going and what to do. Everything is piling up on my shoulders, I can feel the weight, am so very tired. I get angry at the little things. I know it's all part of what I'm dealing with, but, I do not like this person. I'm fighting it which is only making it worse. I also have a Dr appointment on the 14th, I am going to break down and ask him to give me an Rx for my nerves. I do not like taking anything, but, it's come to a point where I have to.

I hate these "woe is me" posts. When I started this blog, I wanted it to be honest and heartfelt. I can honestly say it is. I speak from the heart. Unfortunately, my heart is broken, hence the "woe is me".

Husband continues to be stable for now. Continues to do some strange things. Yesterday morning, for instance. He was getting dressed. He put his pants on, came out, stood in the hallway, did some circles, went back to the bedroom. Put on his socks, came out, did the same thing in the hallway, went back to the bedroom. Got his shirt on, did the same thing. Went back to the room, put his shoes on, and yes, did the same thing. I finally asked him what he was doing, he mumbled something, then came out to the living room. This wandering the house is daily now. He will venture out to the garage and wander there. Will go into the kitchen and open all the cabinets. Step in to the pantry, look around, then come out.

There is one thing that drives. me. nuts. When the phone rings and he hears me start to talk, he will come out and sit, listening to what I have to say. He will make it look as if he came out for a purpose, but it's so obvious what he's doing. Once I get off the phone, back he goes to the room. This, of all things, is making me crazy. I have told him I think that is rude, but he says he "never" does that. Oy Vey.

Into the weekend we go. Of course, the weekend doesn't mean much to me anymore. Everyday is just another day around here. Holding my breath, waiting for the other shoe to drop. Oh, it will, just don't know when. Until then, I'll be waiting to exhale.

Friday, December 2, 2011

Ready for battle

I look back to last week, the anticipation of the holiday, Marie coming, the visits we would have, digging deep to find something, anything, to be thankful for. Of course, we all know how that turned out. So much for my plans.

One week later, husband is stable, acting reasonably normal, or as normal as he can be. All the confusion, anger and total loss of control is gone. Replaced with a husband who is somewhat "normal" with the exception that his attempt at walking is getting worse. I've noticed that he wanders the house more, since last week. Could it be that that part of the brain was destroyed during this last onslaught?

I hate this.

I hate that we can no longer plan anything. I can't even plan on being "thankful" for one day, just one. Because of this disease, our lives are centered on Dementia. I have a routine, somewhat, but it all depends on what was destroyed during the night. My days can be smooth sailing, or they can be rough seas.

I went to the grocery store yesterday. Of course they were playing Christmas songs. It's that time of year, ugh. When I got to the checkstand, that music was really getting to me. The clerk was so sweet, we began to talk. Finally, I said, "Why don't you people turn off that music? There are some people who just can't handle that. Do you know how hard it is for some people to listen to this? Take for instance, me, my husband is dying and I come in here and listen to this music". That poor woman. Within a few minutes, I told her I was sorry, didn't know where that came from. She looked at me with a warm heart. Said she understood, how sorry she was. So am I, I thought. So am I.

What is happening to me? I feel at times as if I'm loosing it. I hate this stable period, because I know it's coming, the bad things are coming. It's just a matter of time. Holding my breath, waiting, crouching, ready for the next attack. Huh, something I've learned is never relax, never. You never know when the next one is going to hit. I'm prepared this time. My shoulders are hunched up, my muscles are tight, my body is in position. Bring it on!

Thursday, December 1, 2011

Stormy Weather

Back online. Internet issues. Have been having them since September. Called cable co again yesterday. They sent someone out late afternoon. I believe he fixed it, at least I am able to get online again. Time will tell. It's only the 3rd time someone has come out to "fix" the issues.

On the home front, things are ok. Husband had Physical Therapy yesterday. Was pretty worn out by the end of his session. Husband seems to have stabilized, for now. He took a bad fall last night. Jack helped him up. All he could say over and over was, "Oh, I fell again. What's happening to me?" Jack and I talked to him softly, but he was scared about this fall. This time, he was scared. I'm scared all the time, just don't show it.

Weatherman said our weather is supposed to turn ugly today. Wind, snow and rain. I told Jack he could take the car to school today, but, told him if we woke up to icy roads, I would take him to school. Woke up this morning to clear skies, no wind, no snow, no rain. It's cold, but where is this "big" storm? Delayed over Arizona? I wonder about our weathermen. Do they really know what they're talking about?

I liken the weather here to Dementia. You can have the most beautiful, sunny days, then all of a sudden, wham, wind, rain and snow. Just like Dementia. You have such smooth periods of stability, tranquil like. Then, boom, confusion with reality, hallucinations, falling down, wandering off and getting lost. Just like the weather, you panic, put on warm clothes, drive slowly and crank up the heater. With Dementia, when it hits, you panic (inside), try to recover, try to find your ground, assure your loved one, go with the flow of this disease. Then, it's gone, and, in it's place is a shell of a man, damaged and destroyed like the wind of a storm. You pick up the peices, clean up the mess and wait for the next onslaught.

Yeah, it's like that.

So, I will wait for the "storm" they are predicting. And wait for the other storm that is sure to come. Oh, it's there, lurking in the shadows, waiting, just waiting. Just when you think it's safe to venture into somewhat of normalcy, it'll come at you with a vengence. Kind of like the weather.

Tuesday, November 29, 2011

Another decision

Nothing new to report. Husband has remained the same. Goes in and out of reality. Is angry about everything.

Tyler & Susie took Jack with them on Sunday, just to spend the day with him, get him away from this house. Tyler decided to take Jack shopping for new clothes and new shoes. He picked out some very nice clothes. I was unable to get him new school clothes this year due to finances, so this helped out alot. I really have me some great kids.

Later, Tyler could see that I was worn out. He started talking to me about husband. He said that I need to start thinking of me, taking care of myself. He mentioned that maybe, just maybe, I should consider putting husband in a Nursing Home. I have thought about it, but just don't think I have it in me to do so. How can I just put him there and leave him there?

Alot of people have their own thoughts on this sensitive subject. Honestly, it has crossed my mind. I just don't think I have it in me. It is something to think about, yes, but can I do it and live with myself?

Tish thinks he should be at home. Of course they are not here, experiencing this nightmare. They see it when they come to visit, but, they are not living, breathing it like we are.

I don't know. All I thought about yesterday was imagining him being in a nursing home, me being here. Would he hate me? Would he get scared without me? He panics when he can't find me now, imagine what it would be like if he was in there? All these thoughts, all these decisions. Whatever I do, will affect my whole family. It's all on my shoulders.

Ever since I was starting out my career in the working field, I have always loved a challenge. When they said I couldn't, I did it. But this? This is a real challenge. I honestly don't know if I could do it. I am so confused, scared, feeling hopeless, lost, lonely and sad, so sad.

Time will tell if or when an intervention needs to take place, and I have to make the decision to place him in a home.

Until then, I will go about my daily routine. Only now, there is another wieght added to my already heavy load. To place or not to place?

Sunday, November 27, 2011

Bitter Pill

I was hoping I could report that husband is better. He is not. There seems to have been a sudden shift in all areas. His walking is worse, his memory, or, lack thereof is worse, his attitude is not good.

I wish I could take him to the hospital, they would admit him, give him medicine, watch him for about 3 days, dishcarge him good as new. In his case, nothing can be done.

That's one of the hardest. Nothing. You get to sit and watch this all unfold. And wait. Wait for signs of this, or signs of that.

I woke up this morning feeling dread. What is today going to bring? How much longer can this go on? I think back to last Sunday. Looking forward to Marie coming for Thansgiving. Was going to make this a good holiday. A good visit. No matter what.

Unfortunately, Dementia made us all aware at just how ugly this disease is.

I'm spent, I'm done. There is no more hope for anything. All I can do now is watch my husband die. That's it. That is what my future holds for me. Nothing else.

I have been reading posts on other blogs. Such happiness. Such "togetherness". Wonderful time spent with family. Looking forward to Christmas and more time spent with family, happiness in the wonderment of the holidays. Blah.

Today I have become someone I don't like. Someone I would avoid. I don't want husband to go through this. I don't want to go through this. I don't want my children to witness this. Yet, here we are, going through this, witnessing this. It's just not fair.

I want to take him to the hospital and scream at them to make him better. Give him a magic pill please, make him better.

The only pill being given out today is mine. A Bitter Pill.

Saturday, November 26, 2011

Guess who's coming to dinner?

One holiday down, one to go. I went into this Thanksgiving day with intentions of making the day happy, making it relaxing and ignoring what is really happening in our house, totally ignoring Dementia.

Dementia had other plans for me. It reared it's ugly head full force and has not let up since. Husband has been on a downward spiral since Thursday morning. He has been delusional and angry.

I had posted earlier that he was freaking out about his tool for his tire changing set. Thursday morning he got up, dressed and asked me if Discount Tires was opened. I asked why, he said he needed to go get a new Jack for his truck. I told him it was Thanksgiving, they were closed, and, we had no money to get a new Jack. He insisted on going yesterday. He went, priced them out and asked me to get him one. I once again told him that I had no money, it would have to wait. He would have none of it.

Once we got home, he went to sleep and is still sleeping. He did get up to have a bowl of cereal, back to bed, back to sleep. He's still sleeping.

Once Dementia patients get fixated on something, there is no stopping them. Husband is no different. He will just not let up. He thinks I'm being mean to him. He thinks I deliberately hide money from him.

Thanksgiving night he asked me when Christmas is. He doesn't remember what day Christmas is anymore. I told him. He said, "I know you don't want to hear this, but, this will be my last Christmas. I'm going to die soon. I don't have much longer to live. I know it, you know it. Don't be sad, it is what it is". And with that, he went sound asleep.

I came out into the living room, my daughters were sitting on the couch, laughing and cuddling together. When they saw me, they both said, "Mommy!!!" I looked at those beautiful girls of mine. I put on my happy face and joined them on the couch. They asked if husband was OK, was he asleep. I nodded my head and said, "Oh yes, he's fine. He went to sleep". Good, they both said.

I kept hearing those words over and over all night long. His voice sounded different. He sounded like, "there, I said it" kind of voice.

He had his "visitors" last night. His speech was clear. He talked normal. He was having a conversation with someone.

So, so much for my "We're going to be thankful" kind of day. I tried, I really tried. But, we had an unexpected visitor.

Dementia came to dinner.

Thursday, November 24, 2011

Hollywood Calling?

It's early thanksgiving morning. I got up at 5 am to get the turkey in the oven. Marie, Burt and the babies arrived around 12:30 am. It's very quiet now, everyone is asleep. Except the cook.

Yesterday was very busy. I baked. I drove Jack & Kristen crazy with the smells. Had to keep a watch when either of them went into the kitchen. They did try to talk me into letting them have a piece of at least one pie. Those kids have known me all their lives, they should of known I would say no. I go through this every year. My kids are funny kids.

Husband slept the better part of yesterday. He has been tired a lot lately. I checked on him throughout the day. Last night around 9 or so, he came to me and told me that someone has taken some of his tire changing tools in his truck. He had not been outside near his truck, he had been in bed. He decided to check the garage. Said it wasn't there, but, someone has taken them. I did not react, just assured him that we would check on it in the morning. No, that wasn't good enough. He went out to check his truck. No tools, he said. I played it down, told him to please go and rest, we have a big day today. He did, but was very agitated.

I think he was hallucinating, it's hard to tell. When these instances happen, I have to keep my cool, else he will really freak out. If I show fear, it scares him. That is difficult when it happens, it happens so suddenly that it takes me by surprise. Here I was, relaxing after a long day of baking, having good thoughts, them, wham, back to this roller coaster we are riding.

When this happens, you find it difficult to be thankful for anything. But, I did make a promise to myself that I would put on a happy face today. At least for the kids.

I am excited my Marie is here. She is so much fun to be around. Hard to believe she is a mom now. When the babies call out, "Mama", I always say "what?" Then, I realize it's HER children. Guess that comes from having so many children.

I plan on having an uneventful day. I plan on smiling and laughing. When we say blessings for our food, I plan on it being heartfelt. If I can pull this off, Hollywood, here I come.

Wednesday, November 23, 2011


Thanksgiving. A time to rejoice in our blessings. A time to reflect. A time to bring families together. A time to thank God for all He has done for us. A time to eat the good food.

This Thanksgiving I have decided to be thankful.

In my house, the air is thick with this horrific disease. It invades every corner of this house. It invades every corner of our minds. It's there constantly, like a hand in front of your face that turns with every turn of your head. It's horrific, scary, sad and depressing.

But, I will not let that monster ruin our Thanksgiving. Today, I will make the pies that the husband and kids rave over. Today, I will prepare the sweet potatoes. The bread for the stuffing has been drying since Sunday. I will look forward to tomorrow, when everyone sits down to eat, they will shower me with their compliments on the delicious food.

And, I will be thankful. Thankful for the husband I have, or had. He loved me as I was, he never tried to change me. He accepted me as I was. His love for me never stopped, even in our roughest patches, he was there. He was one of the hardest working man I had ever met. He was not perfect, by any means, but, he loved me. And, he was my husband.

I am thankful for each and everyone of my children. From the first, Justin, to the last, Jack. Those children opened my eyes to the most deepest love a woman could ever experience. A mother's love for her babies. And, I love them with every breath I take.

I am a lucky woman. To have had a man who loved me no matter what, and, to have 7 beautiful, wonderful, funny, smart, devoted children, well, my cup runneth over.

I will not be bitter. I can't let myself go there, not tomorrow. I will smile, laugh, tell funny stories.

I wish each and everyone a wonderful Thanksgiving. May your day be filled with love, laughter and blessings.

Ours will be because I will make it be.

Tuesday, November 22, 2011

To laugh with my husband

Husband does things lately that often surprise me. There will be times that I don't think he will remember something and he does remember it. Take for instance, yesterday afternoon:

I was going to check on husband. He seemed more tired than usual and thinking he was asleep, I wanted to check on the tremors.

When I entered our bedroom, husband was flat on his back on the floor. He had a grimace on his face. I stopped, gasped and almost tripped over him. I yelled, "Oh no, honey, are you OK, can you hear me?" He opened his eyes, smiled and said, "Oh, I'm fine, just doing my exercises that Debbie (his Physical Therapist) gave me."

At this point, my legs turned to jello, my breathing was rapid, I felt light headed, I stumbled to sit on the end of our bed. All I could say over and over was, "Oh, you scared me, you scared me". He sits up and says, "Sorry, didn't mean to scare you", then, with a chuckle and a smile he says, "Thought I had gone and died on you, eh?" I shuddered, but, after looking at him, we both started to laugh. That took me awhile to calm down. I shook for a good 30 minutes.

Later, as I was dishing up dinner, husband said to Jack, "I scared mom today". He told him what happened. All Jack could do was say, "Don't do that again, dad". He was serious, he did not see the humor in it like we did.

Why did he remember he had to do exercises when he cannot remember where the bathroom is? I don't know. This disease is so tricky. Just when I think everything is gone, there is a little spark to him still. He's not totally gone, yet. There was a sparkle in his eyes I had not seen in a very long time. He laughed, a pure, heartfelt laugh. I have a lump in my throat just thinking about it now. Oh, it was so good to laugh with my husband again.

As I went to bed last night, I looked over at husband, sound asleep. I looked at his eyes closed, breathing regular, small tremors, not too bad. I looked at his head, where all of the destruction is taking place. And I thought, "he's still in there, somewhere".

Monday, November 21, 2011

Tremors, Dr Q and a Thank You

It's early in the morning. Everyone is asleep. I made my espresso and am enjoying the quiet.

We had a low key day yesterday.

Husband was outside puttering around in the afternoon. When he came in the house he told me, "My legs are doing funny things". I looked, he was having tremors in his legs. I had never seen them tremor that much before. I had him lay down to rest. He asked me what that meant, what was happening to him. I told him he probably had been on his feet too much, to rest and it would be fine. He was scared, said he didn't like this. Here's where my "acting" skills come in and I assured me he would be fine.

He seemed to calm down after a bit. A little confused, but not to the extent that it had been lately. I made a nice dinner, he ate very little.

Jack spent the entire evening with his dad. They watched some TV together and played with the dogs. I could hear husband laughing, I could hear Jack laughing. It was almost normal again.

For the past few weeks, husband has been hearing "voices". Actually, it's my voice he says he hears. He will come out and say, "Did you just tell me that we had to get ready to go somewhere?" When I say no, he says, "Well, I just heard you holler that I needed to get up so we could go".

So, the hallucinations have begun. It started out small, but, as the days have gone by, it's happening more and more. I will hear him yell out, go in, check on him. He will be sound asleep. I don't think I'll like this stage. It's scary for him because once he realizes it was nothing, he seems to get very quiet.

Husband had a rough night of sleep. The tremors lasted for several hours, followed by choking. The tremors will start in his feet, move up his body, stop suddenly, then, he coughs/chokes. This happens about every 30-45 seconds for a few hours. He must be asleep when this happens, because I have asked him if he remembers that happening to him, he does not. So, I assume he is asleep. I hope he is. It's not a pretty sight. All the while I lay there thinking, "Is this the big one?"

We see Dr Q on the 1st of December at his new practice. It will be like visiting an old friend. He was the first of the Specialists we saw when we began this journey in January of 2010. He was also the first Dr to deliver the devastating news to us that husband indeed was going to die. Never before in a Dr's office had I felt so much compassion as I did that spring day in 2010. He is a wonderful Dr and am looking forward to seeing him again.

A big shout out to all the recent comments and words of encouragement. Thank you for those comments. When I read them, it gives me a smile. I don't smile much lately, but when you get a comment from a complete stranger, well, it warms my heart.

Thank you all again.

Sunday, November 20, 2011

Dodging the Bullet

Every 3rd Saturday of the month, our church does what they call "Pit Stop". Using the back parking lot of the church, volunteers come and service cars for single moms or dads, disabled, elderly and/or people who cannot afford maintenance on their vehicles. I think it is a wonderful outreach program.

Husband volunteered last month. Of course, he cannot work on cars anymore, but they put him at a table where they had all the supplies and tools. They got a stool for him to sit on. He was in his element last month. He didn't pass out tools much because he would get confused when asked for a specific tool. He was there, that's all that mattered.

He went again yesterday. He did less than last month. I'm sure they realized he can't do much of anything anymore, but, they don't have the heart to turn him away. I like to think he loves it because he is with guys, cars, tools and the grease of it all. He came home tired, but wanted to go to Saturday services, instead of today. We went last night. I noticed his fatigue. His walking was slow and stiff with a little spasticity thrown in to boot.

Today, we will rest. He needs it. I can't tell where he is mentally today yet. I'll know soon enough.

I don't know where I'm at mentally today yet either. I slept good last night. Rare for me anymore. Usually, I have bad dreams. Disturbing dreams. Not so last night.

The Holidays are upon us. I am not in a holiday mood. I would like to just forget about Christmas all together. There is no money for Christmas this year. I don't think I'll put the tree up. Just am not into it this year. I don't feel like celebrating. Then, I look at Jack. It's not fair to him. I have talked to him about it, told him I am not in the mood for these holidays. He said he is not either. How can he be?

My Jack watches his father fading away. He now has to "Dad sit" if I have to go somewhere. He has to treat his father like an unruly little brother. He shouldn't have this kind of burden. He shouldn't have to act like the dad. He should be a kid still. He is so mature for his age. Wise beyond his years. I know he has his moments. We talk. He seems to take it all in stride. On the outside. Inside, he is hurting. He will never be the same child he once was. His world has been shattered too.

Next year this time, Jack will be in the Air Force. Away from here. Away from all of.......this. I long for the day he leaves. He needs to get away. He needs to start his life. I am excited for him to leave. If it weren't for his dad being the way he is now, I would be devastated to see my last child leave the nest. The baby. Not so now.

Jack will be successful. Jack will find happiness. Jack will be responsible for him and him only. No more seeing his dad die. No more seeing his mom struggle. It's his turn to live.

My only concern is, this horrific disease runs in the family. I pray my Jack will not be affected by it. I pray he can live a long and healthy life. I pray he has dodged the bullet.

Saturday, November 19, 2011

Wrong Turn

Physical Therapy went well yesterday. The young assistant did not know what was wrong with husband. As we were walking to the work out area she asked him what his pain level was. He just nodded to her. She gave him a funny look. I decided it was time to get out one of my business cards. I pass these out during an uncomfortable moment. On it it says, "Thank you for understanding, our Loved One has Dementia". She read it, her eyes got big, she turned to me and said, "Oh dear, I'm sorry, I didn't know. I'm filling in for Debbie". I told her that it was OK, but, he doesn't have any pain.

She got him settled on an exercise bike. He almost fell off a few times. Guess she was not used to these type of patients. Once she felt comfortable she came and sat down with me. I gave her a brief history of husband. How much time does he have?, she asked. Don't know, I said. She then put her arm around me and told me to leave. Said he was in good hands, I had an hour to kill, go get some coffee at a coffee shop nearby. I hesitated because leaving him is something I don't do. I gave her instructions on how to handle him. I said if he doesn't respond to her questions, he is not hard of hearing, his brain does not compute words anymore, making it look as if he's hard of hearing. All you have to do, I said, is, guide him to the next machine.

I got in the car and it hit me. It felt like I was leaving one of my kids at daycare. Remember those days? Leaving instructions on how to handle your 3 yr old? I started driving and felt the tears come. Had a short burst and drove to the coffee shop. Felt nervous about leaving husband there, alone, without me.

Once I got back, I found him with Debbie, his regular Physical Therapist. She was talking away to him. "The Look" was there, but, I could see something else. He kept looking around. I think he was looking for me. When it was over, the assistant brought him back out to me. She said, "There's your wife". His face lit up.

On the way home, I asked him what they did while I was gone. He said, "I rode a bike". That's it. He rode a bike. Of course he did other exercises, but that's all he could remember. He rode a bike.

Frankly, I don't know if this Physical Therapy will do any good. His legs are very weak and spastic. There is nothing that can restore the legs. The part of the brain that controls his motor skills is continuing to being destroyed. Can't fix that. I'll continue with the Physical Therapy through December, then I'll decide what to do. He was exhausted yesterday. Slept for most of the day.

How did I get here? How come it is, after all the years of caring for helpless babies, I now get to care for a helpless man who cannot think for himself anymore? I didn't sign up for this. I didn't ask for this. We were going to get the kids raised, get a small house up in the Jemez Mountains and begin a new life. Just the two of us. Somehow, someway, we took a detour and ended up in the Land of Dementia.

Friday, November 18, 2011

One door closed, one door opened?

To date, I have received 1 phone call in response to my Resume, 1 email notifying me they had decided not to hire after all and yesterday, I got an email from another company informing me that I was not selected to interview with them. Ha. So, there you have it. 3 rejections in 2 weeks.

On another email, I received a response from the instructor in Doula Certification. I had emailed her earlier in the month to let her know I could not afford to pay the $400 required to be certified. In her response, she let me know that I qualified for a scholarship to attend, test and be certified. That class will start in February. So, maybe, just maybe this is an opportunity for me? I will certainly be attending.

One door closed, another door opened?

On the flip side, husband continues to decline a little faster than before. There have been so many "episodes" this week.

I took him grocery shopping with me yesterday. I told him to stay with me, do not leave my side. I must've gotten through to him because everytime I turned around, there he was, smiling with "the look". When we got to the register, I had to unload everything myself, husband offered to put the bagged items in the basket. Half way through, he just stopped, stood there with "the look". I started to load up the bagged items when I noticed the look on the cashiers' face. She probably thought he was lazy or mean making me do all the work. Then she saw the cane and realized he was disabled. No need to explain.

This morning I take him to Physical Therapy. He's looking forward to it. I'm not because he is work when we go out. Alot of work. I thought the days of taking children out with me and the work involved was over with. Not so. I have to remind him to stay with me, do not wander off. I have to follow him to the bathroom, otherwise, he gets lost in the building. I have to guide him when we are going into the exam room. He does not follow the nurse, he strays. It's quite an experience folks.

Another adventure for me today. Yay.

There are days that I feel so lost, so hopeless, so alone. But, there are days like today that I realize I may have lost alot of myself in this journey, but, there is one thing that remains.

My sense of humor. Gotta laugh, else if I cry, I won't stop.

Thursday, November 17, 2011

Making a difference!!

I sometimes wonder what my life would be like it Frontal Lobe Dementia had not come into our lives and destroyed it to bits.

I often think, I would still be working, husband would still be the best concrete cutter, Jack would have his dad, we would be like any other family.

Of course, that was not to be. Our lives have been shattered. Our lives have been destroyed. We are not "normal" anymore. We live with impending death every day.

We still find time to laugh, though. We don't walk around crying. We joke, we kid. Only, with a different outlook. We look at the world differently now. We now know that death will happen to all of us. Some a little sooner than expected that's all.

It's not all gloom and doom in our house. We're just....different now.

Some people don't come around anymore. They feel uncomfortable around husband now. If we happen to see them while out, (which is rare), they are the ones who look guilty. I smile and am polite. I make them uncomfortable by my attitude. I don't ask them, "Why"? Of course it hurts. I feel abandoned at times. We have no life to speak of anymore. It's getting harder to take husband out because he wanders away from me, gets lost, then panics. So, we stay home.

I know that if a family member or friend ever had to go through this, I would surely be there for them. I would do what it takes to ease their suffering. But, not everyone is like me. I have come to terms with that, and letting it go. I'm working on it.

This may sound strange, but, I hope when I'm alone, kids gone, husband passes, I hope I can come into someone's life and help them. The desire to do so overwhelmes me at times. I so want to help someone. Maybe I can make a difference in their life? Maybe I can assure them in their dark hours that, yes, this is hard, but I've been there, done that. No, it's not easy, but, assure them they can get through it, they will laugh again, they will live again. Life will go on. Only, they will be "different".

We all have the instinct to survive, it's there, you may not know it, but it's there. I've found that out. Shed your tears, hurt like you've never hurt before, feel as if you cannot go on. But, you will go on. Life will go on. Amazing how we do come back to the living world. We do because we have no other choice.

Watching your husband die is not easy nor fun. I will be different.

I will make a difference. Just wait and see.

Wednesday, November 16, 2011

A new Resume?

I am not in a good place this morning.

Reality has set in.

I watch daily the struggles husband goes through, just getting out of bed. He uses his hands to lift his legs. They don't work anymore. He looks around the room as if to say, "Where am I?" Once he sees me, it's like he suddenly remembers. He eats breakfast. He will sit in his chair, try to have a conversation with me, gives up, goes back to bed. It's too much for him to speak with intelligence anymore. He tires easily. He will sleep for hours. He will yell out in his sleep. He talks to "visitors". He will ask me what day is it, he will ask me what time it is. He will ask me where Jack is. He will talk about the old days, when he was well. He can remember some of it. Other times, he makes up stories. He tells me he was the "best concrete cutter in Albuquerque". His eyes seem to light up when he talks about working and being the best. He will tell me stories of when he was a little boy and how his dad would take him fishing and camping. He remembers that. He doesn't remember where they used to go to, but only remembers they fished and camped. He will ask me again what day it is, what time it is and where is Jack. He will ask me to make a special dinner, I will, only to have him say he isn't hungry or he doesn't like it afterall. He tries again to make conversation. Once we start talking, "the look" appears and I know I've lost him. He will tell me what the weather will be like tomorrow. Sometimes not here, but in other parts of the country. He will ask me when he goes to the Dr again. He will ask me if he is going to see Dr Q again. He will ask me when are his Orthodics coming in. He will ask me what did I do with his money. He will ask me if Jack came home from school yet. He will ask me what day is tomorrow. He will ask me where the dogs are. He will ask me where Kristen is.

I hope whoever reads this will never, ever have to have this happen to you. I hope your husband/wife, significant other, will never have to experience this slow decline into madness. Or you for that matter. To watch them slowly die, slowly loose their mind, slowly loose all their abilities to function, as the life drains out of them. No, I wouldn't wish this on anyone.

The worst part of all of this is, there is nothing that can be done. Not medicine, no surgeries, nor treatment whatsoever. Nothing. You sit here helpless as you witness the life fade into nothing.

You suddenly become so familiar with medical terms, it just rolls off your tongue. You suddenly become observant. You suddenly start looking for signs of "end of life".

With all this "experience" and "on the job training", I could assist other "survivors" if they have the "opportunity" to go through what we are going through. If I could help 1 person, just 1, then maybe this is my calling?

Maybe I should update my Resume.

Tuesday, November 15, 2011


Not much news on the Home Front. Husband continues to decline, I am still looking for a job. Don't know, maybe I am not supposed to get a job? With this sudden decline of husband, maybe it's Gods' way of letting me know how much I am needed at home. Am re-thinking this job search. If that's the case, then so be it. Yes, the extra money is much needed, but, with the recent turn of events, what do I do?

Husband spent the day with his dad. Was nice for me. I caught a breather. I did my laundry. When he came home, he seemed quiet. Didn't say much as he ate dinner. His dad gave him a bag of potatoes. Husband thought that was such a good thing. I guess so. Thanks for the potatoes.

Jack was in better spirits when he got home from school. Tish & Jace called last night with a surprise for him. He will be flying the day after Christmas to visit them for 1 week. I am thankful for them. They are concerned for Jack as I am. This morning, before he left for school, he was much better. When Jack is happy, I can relax a little.

Husband is still asleep. Alot of jerking last night, kept me awake for a few hours. When this happens, he seems to sleep longer in the morning. I am tired this morning.

We had one "episode" last night. He was frustrated about his dresser drawyer. He will not let me put his clean clothes away, has to do it himself. One of the drawyers got stuck. He seemed on the verge of tears. I tried to help, he got angry at me. I then said to him, "You need to stop, I am trying to help you". He calmed down after that. I let him "fix" the drawyer himself. He can be difficult to say the least.

I hope today will be a quiet day with husband. It's all I ever want. Just no "episodes" please, no going into the Land of Dementia, please. If I could have that for just 1 day, well, what a day that would be.

Of course there will be "episodes", of course he will travel to that dark place. He does it all the time now. It's now another new "normal" for me.

Why, oh why does it take me by surprise then?

Monday, November 14, 2011

Levi's & a Cupcake

Another gloomy, cloudy day here in the Land of Enchantment. Cold. Weatherman says it's supposed to clear up today. We got zero rain, zero snow. Just down right cold. For some reason, I have had a hard time keeping warm these past few days. My body just can't warm up.

Husband is not good. He has been confused the better part of this weekend. Jack and I sat down last night to watch a show we both love and husband came into the living room in a panic. He said he had no pants, did I know where they were all at, he had no clothes to wear. I gently told him that he has Levi's in his drawyer. Oh no he doesn't, he says. Said he had been through all of his drawyers, no clothes, but, what he did have are old, full of holes clothes. Said everyone but him has nice clothes.

I could feel Jack tensing up. The look on his face broke my heart. I told husband we would deal with this in the morning, that I would find his jeans for him. Husband was so confused, he turned circles, trying to find the hallway to go back to the bedroom. I could hear him talking to himself about the lack of clothes, but, soon stopped. Jack said, "I hate him".

With my heart in my throat, I told Jack his dad is very sick, don't hate him, hate the disease and what it's done to his dad. Jack would not hear of it. I told him I understood how he feels, but, try to understand what his dad is going through. Try getting an impressionable 17 yr old to understand that.

Jack has alot on his mind. The pressures of graduating, going into the Air Force. That's alot. Then, to come home and watch your dad slowly turn into a helpless, mindless, pathetic man is not for the weak minded. It is pathetic. It's not fun to live in my house.

After our program, Jack went to bed. A few minutes later, I went into his room and spoke with him. He didn't want to hear me, but I told him I loved him and was there for him. He muttered, "Uh huh".

Kristen had gone to a kids' birthday party. She brought home 2 cupcakes, one for me, one for husband. I took his into him, told him that Kristen was thinking of him, here is a surprise for you. He looked up at me with a blank stare, eyes glassed over, "the look" you know, smiled and said, "For me? Why thank you". It was as if he was talking to a stranger. As I was walking down the hallway, it hit me. He did not know me for a moment. I almost threw up.

So, here I am this morning. My husband is loosing his mind, my son is struggling something awful and I am trying to keep it together for sake of all of us.

Oh, Heavenly Father, hold me up, hold me up.

Sunday, November 13, 2011


The past few days have been hard to live in my house. Husband is continuing to decline, faster than ever before. His attempt to walk has been difficult, more than before.

Last night, after the dogs had done their business outside, I let them back in. Husband was standing by the door, watched the dogs come in, chuckled at them, then, turned to the door and whistled for the dogs to come in. I could not believe my eyes. He turned around to face me. I did not recognize him. There was a difference in his facial features. He looked down, saw that the dogs were in the house and said, "There you guys are".

Husband loves to dust the furniture. That's his job, he loves to do it. Yesterday morning, I asked him to dust the furniture. He nodded his head and went into the bedroom. I finished up in the kitchen, thinking he was in the bathroom. Waited about 20 minutes, then, went in the bedroom. There he was, sound asleep in bed. Checked on his breathing, that was fine. He slept about 2 hrs. I dusted.

Jack has noticed it as well. When I was cooking yesterday, he came to me and said, "Mom, dad is not acting right." I told him the disease is taking over now, this will happen. We just have to act like nothing is wrong. He stood there looking so sad and my heart hurt for that child of mine. Finally, he shrugged his shoulders and said, "I don't like this, mom". I know, son, I know. I don't either.

I was looking at his feet last night and noticed that his toes have curled inward. I also noticed that he could barely walk. I asked him if he needed help getting back to the bedroom. He said no. With every step, it became clear to me that this is the beginning of the end.

Kristen went to the ER yesterday for her wisdom teeth. She has to have them removed, but, was in alot of pain. When she got home, husband talked with her, then, she went to lay down. About an hour later, husband said, "Where is Kristen? Is she still at the Dr's?"

My heart is heavy today.

Thanksgiving is coming up. I didn't know where we'd be last year this time. Now I know. We will not be going to Tish & Jace's this year. Can't afford it, plus, the long drive will be too much on husband. I will cook a nice dinner for us, Pat & Christine, Tyler & Susie, Susies parents, Marie, Burt and the kids will be here. I will smile, act as if I'm thankful, enjoy the people around me, enjoy the many conversations we will have, be courteous when my cooking is appreciated and pretend like we are no different from any other family.

This morning, I am going to church. When I get there, the music will be playing. Loud, Christian rock style. As I stand there, clapping my hands, singing, I will say a silent prayer, a prayer of desperation.

"Lord, still my Soul".

Friday, November 11, 2011

The Wanderer

It happened again. Yesterday, at the Pharmacy, there was a mix up in husband's meds. Once we got it all straightened out, they said the wait would be about 1 hour. I was not happy about it, but, there was nothing I could do about it.

I turned around to go sit down and husband was gone. I looked all over the waiting area, checked outside and decided he had gone to the restroom. Waited, he never came out of the restroom. In a slight panic, I went outside again, looked over the parking lot, looked towards the car, and there he was, sitting in the car. Looking like he was lost, so lost. I motioned for him to come here. Once he got back to me, I asked him what was he doing. He was so confused, didn't know how he had gotten to the car, thought we were leaving, didn't know what was going on. I reminded him that we had to wait for his Rx.

Once I got him back inside, he seemed to calm down. I talked to him, trying to amuse him. After awhile, it worked. I asked him to stay with me at all times when we are out. He nodded his head, like a little boy being scolded by his mama. From now on, he will have to be watched continously.

Once we finally left the pharmacy, I suggested to husband that he use the ramp instead of the stairs. He said no, he could do it. As he was stepping down, his legs started to tremor. I looked at him, he looked at me. I asked him if he needed help getting the rest of the way down. All I could think of was him falling and hurting himself. He said, "Oh, no, my legs are shaking because it's so cold." Oh, OK.

I knew all this would happen. I did my research, I know what is going to happen. But, when it actually happens, well, it really, really slams you in the face.

People now stare at us. They watch the way husband walks, they can see "the look" now, it's so present. As we walk by, we are looked upon with pity now. Children stare at him now. I want to announce to everyone, "Please, don't stare. He's a very sick man, he's going to die, he's a husband too, he's a daddy too, he's loved too, he's still a somebody too."

He will always be a "somebody" to me.

Wednesday, November 9, 2011

Who's that knocking on my door?

Husband had a much better night last night. Either that or, I was so tired I never felt him jerk or yell out loud.

Have had alot of memory issues. His wandering around the house bothers me. Actually, it's maddening. He will circle the house, act like he is looking for something but, "the look" is there, so you know he's not really there. After awhile, he comes out of it, will lay down on the bed and go to sleep. It doesn't happen everyday, but, it's beginning to happen more and more.

I can always count on husband for the weather update. He likes to watch the weather channel and will tell me what the weather is like all over the country. Somehow, someway, he understands what the weatherman is saying and will keep me informed about a storm in say, North Dakota. If you ask him about the weather here, he will pause, go into the bedroom, tune in to the weather channel, check local weather, then come out and give me our weather for the day. I have to act like that's very important to make him feel important. Actually, I could care less what the weather will be as long as I don't have to go out in it. If it's cold, well, it's cold.

I am finding little ways of making husband feel important. One of those ways is putting him in charge of the weather forecast. He loves it!

On the job search, have not heard back from the company that called me Monday. Really expected them to call yesterday. Am trying to not get anxious about it, it'll happen, just don't know when. I did get an email from another company. They thanked me for submitting my Resume, however, they decided not to hire afterall. Well, at least they didn't reject me. Gotta go with some positive thinking here. Everytime the phone rang yesterday, I jumped. There has to be someone out there who will be interested in me, somehow, somewhere.

Husband seems OK with me going back to work. He told me the other day that he feels bad he cannot work anymore to help us out. He said he knows I have alot on my shoulders, that he feels sad about our situation. I told him not to worry, I'll take care of everything. And, I will. I just need a job. Someone, somewhere, are ya listening?

Christmas will be quite pitiful this year if I don't get a job. Can we just skip it, please? I don't even want to think about it. Ugh, here I go again, getting all anxious and sad. I hate that.

As I said my morning prayers this morning, I asked for a door to be opened to me today. Trust me, I'll be there to answer that door!!

Tuesday, November 8, 2011

Call Back!!

Husband had a rough night. Did not sleep well at all. He shouted out several times. He had alot of jerks. He was very restless. Tosssed and turned. When husband has a rough night, I do as well. This morning, he is confused and a little upset.

When we get little breaks like we've had, you tend to get a false sense of security. Like, "whew, glad that's over", kind of thought. When it strikes again, you feel deflated and hope seems to dwindle.

This disease is like riding a roller coaster. One day it will stop. When it does, I will no longer have a living husband. I say living, because my husband is gone, the real one, that is. The one I knew. In his place is someone that is pitiful. And it hurts, alot.

Imagine your husband. Take a real good look at him. Big, strong, manly guy. Lucky you. Now, look at my husband. Not so big anymore, holds onto walls & furniture to walk, stumbles, knees have spastic movements, a vacant, haunted look on his face. Ever hear of the old saying, "The lights are on, but nobody is home?" Get the picture?

On a happier note, after responding to several companies, I got my first call yesterday. Talked to me about the position, asked me if I would be interested. She seemed interested in me and the software I've used. We will see if they call back. She said they are only calling the ones who are qualified. Let's hope she calls back. I know it's only my first call, but, I always seem to find this thing called "Hope" somewhere deep inside of me. Will leave it in God's hands now.

It did make me feel good that after less than a day, I get a call in response to my Resume, that soon. I know what my qualifications are, but, nice to know others recognize it also. We shall see what today brings. I do not want to get my hopes up, but, at the same time, I do.

The idea of working, being with "normal" people, people who retain what you tell them, having intelligent conversations, I've missed that. Didn't realize just how much, until yeterday.

The start of a new day. Possible new beginnings.