Husband's last camping trip

Husband's last camping trip

Monday, October 31, 2011

Reflections of years past

We had an OK weekend. Kind of quiet. I hadn't felt good the last few days, from lack of sleep, so I rested all day Saturday, slept good that night, so, we went to church Sunday morning instead of our regular Saturday night.

Husband was in good spirits all weekend. A lot of memory lapses, but guess I am getting used to that.

Pat & Christine printed up the cards I had asked for. They look nice. Now, when we go somewhere and people try to communicate with husband, I can slip them a card that says, "Thank you for understanding our loved one has Dementia". This will solve any issues I have learned to deal with in public.

Looking at the cards reminded me that this is really happening. It seemed strange. As I was looking at them I thought, "This is MY husband we're talking about". Kind of a small punch in the gut.

I remember 3 years ago this time. Tish was pregnant with baby Alex, we were looking forward to his birth, I had been laid off from my job and I knew something was wrong with husband. Alex came 3 weeks early, emergency c-section, Jace was in Iraq, so I had to step in and take care of all of them. The whole time there was this nagging thought and a heaviness in my heart. When Alex was born, I clapped, laughed and cried. And there it was again, this feeling, deep down inside of me knew he was sick.

Then, one week before Christmas, after working for 30 years as a concrete cutter, being one of the best in town, husband looses his job. I was cooking spaghetti, standing at the stove. He comes in and tells me this news. OK, I thought, the worst happened. I had said earlier in the month that the worst thing that could happen would be if husband lost his job. So, he did.

How I wish that were true today. The worst that could happen if he lost his job? No, my friends, that's not the worst as I have found out. The worst is when you take husband in for a referral to a Neurologist. Waiting for 3 1/2 months for an appointment. Finally, finally, we will get answers. Be careful what you ask for.

4 months later, on a spring day, you get your answer. The nagging feeling inside of you goes away. Replacing it with a pain in your heart that to this day, remains. It hurts.

The Dr smiles at you, but not in a good way. They all have one of those smiles. They must've practiced it in Medical School. He sits you both down, clears his throat and begins with, "I'm so sorry................................"

Yep, that's the worst that can happen. Because it happened to me.

Saturday, October 29, 2011

The Circle of Life

Tyler & Susie's wedding was nice. It was in the downtown courthouse in one of the courtrooms. It was in the new Metro Courthouse. Well, new in I've never been in that big one before.

Susie looked so beautiful, she was glowing. Tyler looked so handsome in his suit. He's never owned a suit before. I love Susie's family. Her mother and I have always gotten along. She's outgoing like I used to be. Her two little sisters are the sweetest. After the ceremony both of them came up to me and said, "We're related now". She has a little brother who suffers from a mild form of Autism and another disease I cannot spell. It's the one where they get upset around other people. If I tried to spell it ya'll would laugh, so, use your imagination.

We then went to Los Quates for the celebratory late lunch/early dinner. I found myself laughing, relaxing. I almost felt like the old me again. Husband seemed happy too. I leaned over to him at one time and said, "Do you remember this place?" He smiled and said, "I do".

Husband and I, in our dating years, used to go there alot. That was a long time ago, and, they have changed somewhat, but, sitting there yesterday took me back.

As we were given our menus, husband seemed to struggle a bit. I know he couldn't actually read the menu, but sure gave it a good shot. Kristen saw him struggling when I was talking to someone. She leaned across the table and told him what it said. When it came time to order, he proudly showed the waiter what he wanted. He kept his finger on the spot where Kristen had pointed to. His finger seemed glued to that spot. I glanced at him, he looked at me and we both just smiled. It seemed to me he was relieved to have gotten that out of the way.

It was such a great day though. Dan, his best friend from high school was there. I had not seen him in a long time. He came up to me, gave me a big bear hug and said he had heard about husband and was so sorry. We were together as a family. I laughed. Husband laughed. We cried, happy cries. We joked. We remembered. We expanded our family.

And, just for a few hours, we got to forget about our reality. We got to forget about Frontal Lobe Dementia. We got to forget about this horrific disease that consumes us.

Instead, we got to celebrate the union of Tyler & Susie. A fresh new beginning. A new life. Children for them. My throat tightened as I sat back, taking in all of this, remembering when Tyler was born, his growing up years. He's a man now, with a wife. He will be a father one day.

Life will continue.

Friday, October 28, 2011

"You got a problem?"

I slept last night. Felt so good to wake up this morning. If husband did any jerking, I certainly didn't feel it. Woke up once, then back out I went. Still had dreams, only, they weren't bad ones. Crazy dreams last night. I needed a good nights' sleep.

Husband has this crazy thing for our trash pick up each Friday. He got up early to take the trash out. Usually, one of the kids puts it out. He wanted to do it this morning. When the truck came by, he went outside, stood on the porch and watched them do their thing. Reminded me of when my boys were little and how they would watch from the window. Husband looks forward to Friday mornings and the trash truck.

It went well yesterday at the hospital. Only, they did not forward his whole file there. So, when we got to the reception desk to check in, the girl started talking to husband. He looked at her like she was talking a foreign language. I took over, said I would sign for him. She said he had to sing. I told her I was Power of Attorney, I would sign. She just shrugged her shoulders.

Once we got in the examine room and the Orthotist came in, he too did not know that husband has this disease. He started talking to him, husband got "the look", he started fading away from reality. I took over. The Orthotist looked confused. I didn't want to say anything in front of husband, so, I said that he has motor control issues. Then, this guy had husband walk for him without his cane. As husband was trying to walk, the Orthotist glanced at me. I just nodded my head.

He then made casts of husbands legs. Showed us what these braces look like. No metal, they look kind of like boots. Pretty neat. They will go under his pants and into his shoes. Husband seems satisfied about all of this. We go back on the 9th of December to get fitted.

All in all, I was pleased. Later yesterday, I was thinking about the visit. When people try to communicate with husband they know something is wrong with him, but can't put their finger on it. It was hard getting this receptionist to understand that dealing with husband is not an option. I wanted to say to her, "Lady, he can't understand you anymore. He's sick, he's going to die, he can't remember anything, he can't talk like you and I can anymore. Leave him alone". Of course, I didn't. I just don't like having to explain things like this to people.

I really have to make up these cards for people. You just slip them this card that says, "Thank you for understanding, our loved one has Dementia". This will solve a lot of questions people have in regards to situations like yesterday.

When someone tries to communicate with husband, he will politely listen. I watch his eyes. If he doesn't understand, his eyes go blank and "the look" takes over. I think it's the brain trying to understand, but can't anymore, so it shuts down. Hence, "the look". He will nod his head, smile, seeming interested in what you have to say. Minutes later, he will ask you the same question. There are some who rear back at him, look at him like he's stupid and, either change the subject, or, repeat themselves. That's when I take over.

Some people think husband is hard of hearing now too. He's not. It's just that his brain can't compute it anymore. His TV, for instance. He has it real loud. I think he's trying to compensate for the loss by having the TV loud. He can understand it if it's loud? Makes sense to me.

It's funny how much I notice the little things. These little things that all make sense to me. Like putting a nail in the wall in the garage. No reason. Just wants to hammer. Turning his TV loud. Being afraid of going out in public and having to go to the bathroom, number two. Before we go anywhere, he will sit on the toilet for some time, hoping he will go number two. If I want to leave at a certain time, I will tell him that we need to leave 15 minutes later, giving him time to go to the bathroom. Funny how you adapt. It's just this new "normal".

As I watched him this morning, standing outside watching the trash truck, it broke my heart. He loved watching the barrel being lifted up, turned upside down and put back on the ground. One of the men glanced at him. The look on his face was something like, "hey man, you got a problem?"

Yeah, as a matter of fact, he does. You wanna make something of it?

Thursday, October 27, 2011

"And the Award for Best Actress goes to......................................."

I did not sleep well last night at all. Once again, I had bad dreams when I did fall asleep, and husband was restless with his whole body jerking for the better part of the night. I finally fell asleep, only to wake up from another bad dream. Frustrating. I'm tired this morning, but, have to take husband to the Orthopedic Specialist early for measurements on his braces.

Husband seems excited to get these braces. He told me yesterday that once he gets the braces, all will be well with him. Sure will, I say.

He was rather quiet yesterday. Puttered around in the garage. I heard some hammering. Went in to see what he was hammering. He was putting a nail in the wall. No reason, just putting a nail in the wall. I didn't ask any questions.

It's like that. I find him doing the strangest things. I don't ask him why anymore because he doesn't know why. He just does it. I did at first. Before, when I would ask him a question, he would try to answer, but the words wouldn't come.

This sudden onslaught of the jerking so much and for so long in the night bother me. No use in calling the Dr. Oh, they'll call you back, but, all they say is "Mrs Lucero, it's all part of the disease, his brain is shutting down and short circuiting. He will jerk". I don't call the Dr anymore.

We have to leave early this morning for the Dr appointment. I have to wake him up. He will be confused as to why I am waking him up. I will have to remind him of his appointment. He will ask me numerous times what time his appointment is. Then, I get to drive in rush hour traffic, with him sitting beside me. He will tell me I am going to hit a car, a car is going to hit us, I am running a red light, (it's green guys, trust me), I am going to get a ticket for speeding, (can't speed in rush hour traffic), I drive reckless, I am scaring him, he's trying to find the brake on his side, he will moan and groan as I'm driving and look around as if he wants to jump out of the car. Then, as we walk in and the Dr's receptionist greets us, she will smile and say how was your commute? "Good", I say, and, I will smile just as big.

I should of been an actress. I am Academy Award material here.

Let this new day begin.

Wednesday, October 26, 2011

Winter & Dementia

Woke up to cloudy skies this morning. Was partly cloudy yesterday, but today looks like real rain. I like the rain. Soothing. It's pretty cold though. Some of the mountains surrounding us got some snow. Winter is upon us. Here we go. For the next six months or so, no more windows open, put on layers of clothes to stay warm, turn down the thermostat to save on gas, can't afford a big gas bill, no birds will be singing in the morning.

The squirrels are on our block wall in the back yard. They are storing up for the winter. My dog, Bessie, goes crazy as they run across the block wall. She will lay at the sliding glass door and watch for them. When she sees one, she will almost eat through the glass to get at them. Once I let her outside, she will race to the block wall, and, jump in mid-air trying to get at them. The squirrels just look down at her in disgust. The wall is 8 ft high. It's funny.

Winter. There is something about Winter now that makes me think it's kind of like having a husband with a terminal illness.

The trees loose their leaves. The birds no longer come out. It gets dark early. The roads can get snow packed and icy. We wear a lot more clothes. Our houses are closed up against the cold. And yet, life goes on. We still go to the grocery store. We still go to church. Most people still go to work. It's just.......different.

When husband is gone, I will still go to the grocery store. I will still go to church. I will still leave my house. Whether it be in shorts or warm clothes. All that's changed is the temperature. Same as with husband being gone. Instead of taking husband with me, I will go alone. There will be no more repeating myself, no more husband wandering the store, no more sleepless nights as husband jerks and chokes, no more watching husband as he descends into the World of Dementia. Instead of Mr & Mrs, it will be Mrs, with a pause, then added, Widow.

But life will continue on. Just like in Winter. It doesn't matter if it's freezing outside. Life has to continue. It doesn't matter if husband has passed on. My life will continue. It will be just.........different.

Tuesday, October 25, 2011

Fun Facts

Here are a few "Fun Facts" on caring for your spouse suffering from Frontal Lobe Dementia:

You sometimes wonder if YOU have Dementia too.

You question yourself many times throughout the day.

You repeat yourself. All. Day. Long.

Your husband still looks the same, a little thinner, a little hunched over, until you look into his eyes. Haunting, blank stare.

You get to remind your husband where the bathroom is.

You cannot leave your husband alone any longer.

You are constantly watching for signs of seizure activity or, stroke.

You have to watch him like a mother watches her child when out in public.

You have to watch for reflex failure. When eating, making sure he doesn't choke. This can be fatal.

You know that if he does go into a full blown seizure, even if you call 911, you have a DNR on file. They won't "bring him back".

You have to listen to your husband with no reaction as he blames you for everything.

You have to repeatedly tell your husband you are not hoarding money.

You have to just agree with your husband that the Doctors got it all wrong, he is fine.

You have to agree with your husband that he is only having a "little" issue with his legs, nothing more.

You get to, at the end of the day, sit back, try to relax, be glad your husband is asleep finally, review your day, wonder how long this can go on, watch a little TV, go to bed and watch as your husband jerks. All. Night. Long.

You get up in the morning always with hope. Hope that the new day will bring a repreive from this awful disease, only to have your husband wake up and start asking the same questions from the previous night.

You get to lower your shoulders, feeling defeated, start in with your answers. Answers that don't make sense anymore to your husband.

You get to, when your husband looks at you with fear in his eyes, smile, tell him he's fine and prepare yourself for this new day.

Welcome to my world!!

Monday, October 24, 2011

Listen & Learn

I had an OK weekend. Went to a baby shower on Saturday, then off to church Saturday evening. Sunday, I made a brisket, Tyler & Susie came to eat. Haven't seen them in awhile. Pat & Christine stopped by too.

Tyler & Susie are getting married this Friday. I am happy for them. They are looking for a house to buy. They want to get out of their apartment before their lease is up in January. They make a good pair.

Husband has been so so. We have had alot of memory issues this weekend. Jack took him to his dad's house Saturday. I had told him all week that I was going to a baby shower on Saturday but, would be home in time to go to church. When they left Saturday morning, I once again told him where I was going. While I was at the baby shower, he started blowing up my phone. When I didn't answer, he called Kristens' phone. Jack helpd him dial Kristens' number. He doesn't know how anymore. Once I got him on the line, he was in a panic, asking me where I was. I told him I was at the baby shower, remember? He said, "Well, you never told me about any baby shower". So, of course I just had to agree with him. Easier. When I got off the phone, everyone was looking at me. They all know what's happening here, so it wasn't hard for them to get what had just happened. The look on their faces said enough. It was pitiful. They just hung their heads. I said, "OK, so what were you saying?" They all seemed to relax a little. When I left, they all hugged me a little tighter than usual. Some of them said, "God Bless You".

Husband does not like it when I leave. I suppose I am his security now, and when I'm gone, he feels lost. I do everything for him, including his thinking.

I told him that he has an appointment on Thursday to get measured for his braces. We talked about it alot. Saturday, he asks me when are we ever going to hear from the Physical Therapist about going in to get braces? I always have to stop for a moment, look into his eyes, see that blank look, that haunting blank look, then, I answer him as if it's the first time.

I am trying not to say to him, "remember?" because, he doesn't remember. It's just habit to say that, but, for a person suffering from Dementia, no, they don't remember. I have to remind myself of that all the time.

Tyler said to me yesterday, "Mom, he's gotten bad". You think? "Is he like this all the time now?" I told him no, but, alot of the time. He looked so sad. I told Tyler to just go with it. Often, during the afternoon when they were here, I heard Tyler repeat himself over and over to husband. Tyler looked a little tired when they left. Ha, welcome to my world.

So, a new week has begun. Another day. Days of memory losses, days of watching husband attempt to walk. Days of watching husband stumble. Some days of watching husband falling over his own two feet. Days of looking at my husband eyes, and see the life drained out of them.

In the beginning of each day, in the quiet of my home, I now give thanks for everything to God. Only He can carry me through this. It's all I have. Hope in Christ. I am learning not to be anxious in anything. Just let if happen, because it's going to happen anyway. I'm learning and listening. I hope I do Him and husband proud.

Saturday, October 22, 2011

A good weekend?

All is well on the home front. Or, as well as can be.

Got the call for husband's braces late Thursday. Have to take him in next Thursday for fittings and measurements. She said it could be up to 3 weeks before they come in. I don't know if orthopedic shoes come with the braces or I have to purchase them separately. I am hoping they come with. Those shoes are very expensive and I don't have money for them.

We went to our couples group last night. It was nice. I like the other couples there. We fit in. I also joined a grief group on Thursday night. It's called Grief Share. Some of those people have gone through the most horrific of situations. Yet, they are here, surviving.

One of them just lost her baby at 9 months pregnant. He died in utero. One of them had a son lost to suicide. The stories they told. One woman lost her entire family except for her son to a car accident. Awful, awful stories.

But, there they were, telling these stories, and still breathing. One woman lost her husband to a heart attack. She said to me, "I don't know which is worse. Mine so suddenly, or yours, watching him suffer". She's right. What's worse?

Afterward, I was thinking that husband may still be here, but, the man I know is gone, forever. I don't have a husband. I have another child. The man I fell in love with is no longer here. He may look like him, but it's not him.

I do everything. I make all the decisions, pay bills, make Dr appointments, budget. It's all on me. All of it. I might as well be alone. And, I am, in a way. Maybe this is God's way of preparing me for the future, when I really will be alone. The transistion may not be as hard as some think.

We are off to a good start to the weekend. I hope it's a good one. I hate going to that Dark Place. When it happens, I feel so helpless. I don't feel strong then. I feel scared and alone. I don't show it, but my insides quiver.

I don't like it when my insides quiver.

Thursday, October 20, 2011

The Learning Curve

Another day dawning. Quite chilly this morning. On the home front, all is stable. Of course, husband is not awake yet, so, it's quiet and comfy here, for now.

Husband was quiet yesterday. No sudden outbursts, no going to that Dark Place. Didn't like what I made for dinner but, ate it anyway. After dinner, he went to bed. Didn't go to sleep, just watched TV. Was still very quiet.

Now, that can mean anything. Most of the time, after he has gone to that Dark Place, he gets very quiet afterwards. I am learning what all these symptoms mean, what to look for. Everyday there is something new to watch out for.

Tonight, I go to my first meeting with this new support group. It's at the church. It's for people like me who are losing a spouse or have already lost one. This will be good for me. Husband said he wants to go with me. Uh, no. I told him it's a Womens' Group, no men allowed. If I told him what it's really for, he would get very upset. I have learned what to tell him and what not to tell him.

As my day begins, I don't know what it holds for me. My day always starts out quiet and calm. Everything I do depends on where husband is in this disease. Everything. If he is stable, then, great. If he is not, then, not so great. I have learned to just roll with the punches. Or, at least I am learning.

Everyday is a learning experience for me. As it should be for everyone. My learning experience is interesting. I get to learn what it's like to watch your husband lose his mind and eventually, within 18 months, die.

Yay for me.

Wednesday, October 19, 2011

Cover the birds!!!!!

The Physical Therapist called yesterday. Seems husband doesn't have to go to see the Orthotist. She conferred with this Ortotist and it was agreed upon both Dr's that husband does indeed need leg braces. All I had to do was call Dr A's office so he could write a prescription for them. Waiting to hear back from Dr A. That shouldn't take long, so, soon, I hope, husband will be able to walk a little better. For now at least.

Husband seemed excited about it. Couldn't stop talking about it. As the afternoon turned into evening, he got a little confused. He asked me if it was going to be longer than 6 months. For the braces, I said? No, it should only be a matter of weeks, I suppose. He then asked me what they looked like. I don't know, I said. Followed by when can we go to pick them up? As soon as we hear from someone, I say. When will that be, he asks? And on and on. Guess you get the picture as to what my evening was like last night.

Later on, he came and as serious as can be, said, "You know, I'm worried about the birds". "Why?" I ask. "Because, you don't cover them at night and I'm afraid they are going to die". I looked at the birds, they were covered, I covered them. So, I say, "They're covered, I covered them". "No, you need to cover them, they will die", he says. This went on for a few minutes. Finally, firmly, I say to him, "THE BIRDS ARE COVERED". He says, "I'm going to bed, I don't want to fight with you, but you need to cover the birds". "OK, I will do that right now", I say. With that, he seemed satisfied, but mumbles all the way down the hallway, saying, "she needs to cover the birds".

He went to that Dark Place. That place where I don't like to go. That place is scary, heartbreaking, confusing and painful. It can rattle even the most sane person.

He seems OK this morning. Has asked me what I'm doing today. What are my plans. My plans? All depends on where his mind is, I want to say.

He's got "the look" today. That haunting, blank look in his eyes. It may be a rough day. Ugh. Times like these are becoming more frequent. More often.

Good ole' Frontal Lobe Dementia. Sure know how to hurt a guy.

Tuesday, October 18, 2011

Little boy lost

I did my heavy grocery shopping yesterday morning. Husband loves going with me. I do not like taking him with me.

I had a basket, but, he wanted one too. So, he pushed around an empty basket. Pushing a basket helps him keep his balance.

At the very end, husband wandered off and got lost. As I sat there at the front of the store, looking for him, it reminded me of when the kids were little and I lost Patrick in the store. Someone paged they had a little lost boy. Of course it was Patrick.

Sitting there thinking back to all those years ago, I didn't panic. I suddenly got sad. Here I am, thinking I should go to the front desk and ask them to page my husband, who is lost and wandering somewhere. Then, I would probably have to explain why he is lost and I just didn't want to do that.

Then, there he is. He had been wandering outside, looking for me. He seemed a little shaken, a little nervous as to what just happened to him. I had one more stop to make, a quick run in to Costco. He stayed in the car. As I was going through Costco, I imagined him wandering the parking lot. I hurried as fast as I could. I was walking towards the car, making sure husband was still there. He was. His head was bent as if in prayer. But, he wasn't praying. He looked like a beaten man. When he glanced up, I could see the look in his eyes. It was one of fear and sadness.

Later, he was in the garage, just wandering. Doing nothing. I think he goes in there, just to look at all of his tools. I never say anything to him about that. We didn't talk about what happened at the grocery store either. Why? No good will come of it. I just have to keep an eye on him now. Like a child.

The next phase is starting.

What do I do from here on? I have to go with the flow. My life is now centered around the many faces of Dementia. I do what I do. I never know if it's right or wrong. I just do it.

Today I am hoping will be a good day for husband. He will be home where he can't get lost. If he gets confused, he won't have far to go. I have to watch him now, like a litle boy lost. It's like that now, you know?

Monday, October 17, 2011

Happy birthday, Mommy

Another beautiful day yesterday. Not as warm, but yet, still beautiful.

In the Land of Dementia, I am happy to report we have stability.

Jack & husband spent the day at grandpas' house. Father in law is proud of Jack (his namesake). He told him how happy he was for his choice in going into the Air Force. They talked, laughed and ate. They sat outside on the porch swing. Three generations of men. Husband came home glowing and smiling. Jack said he really enjoyed spending the day with his dad and grandpa.

I, on the other hand, spent the day reflecting. It was quiet here in my house. Even the dogs behaved.

Last Thursday was my mother's 94th birthday. I called her to wish her a happy birthday. Normally, I call her every Sunday morning. She got two calls from me this week. She sounds tired now. Hello? 94? I know the day is coming for "the call" from my sister, just not ready for it. Who ever is? I love my mother. She has her way of doing things different from me. She has her way of talking different from me. She can test even the best. She's not perfect, but, she's still my mother. I love her. I will cry when she's gone. I will miss those Sunday morning calls.

Sometimes, in my darkest of days, I think what will I do when my mother and husband are gone? Both of them, gone. How will I breathe? How will I walk? How will I live? Who does this? How do they survive?

I don't know, but, one day, I will walk that path. I will breathe, I will walk, I will live.

Who knows, there may be someone out there who will one day go down the same path as I am today. Someone that will reach out to me, someone that I can help. Someone I can be a witness to. Someone I can guide through this hell. I hope so. Not that I wish this on anyone, but, I am going through this for a reason. If it means I have to go through this to help someone else, then so be it.

When you run a marathon, you have to have a trainer. You have to be fit for that kind of endurance. God is my trainer now. I'm not fit yet, but if I keep listening to Him, I can do it.

Sunday, October 16, 2011


We are having the most beautiful weather. Warm during the day, very cool at night and early morning. Not a cloud in sight.

This weather reminds me of my life now. The cold is coming. The freeze is coming. The snow will arrive. The winds will take your breathe away.

But, for now, it's beautiful. A little reprieve for now. A little, but I'll take it.

I don't know when husband will go to that dark place again. Just like I don't know when the cold will hit. All I know is that it's coming.

Today, I will rejoice in what we have, or, what's left of us. My family has been broken by this disease. We don't say it, we live it. It has affected us in ways I didn't know possible. Some family members prefer to stay away, some grow closer to us.

They cannot recognize that husband is dying. They cannot accept he will no longer be with us. So, they stay away. It's their way of coping. They have to do what they think is best.

God showed me yesterday just how much He loves me. He showed me that I will have a life after husband. He showed me that life will be good. He showed me that I will be OK.

Not only in words, but, in this beautiful weather we are having. I like to think that He prescribed this weather for me and me only. He loves me.

Saturday, October 15, 2011

Anywhere but here

Oh, what a week it's been. I can honestly say this has been the most troubling weeks ever.

Husband seemed OK on Monday. Monday night, he took a nose dive into the Land of Dementia. It was a downward spiral that happened so fast, it left us all rattled. There is no warning, no suttle changes, no nothing. He went from quietly watching TV, then, no warning, he began talking about money, how I was hoarding all the money (don't I wish), he knows I have it all stashed somewhere (don't I wish, again), and, he demanded $100, right now.

I immediately knew he had "crashed", so I quietly told him I have no money, the money is in the bank, well, what's left of the money. I then told him to go lay down, relax. He was having none of it. Said he was going down to the bank in the morning to get all "his" money.

Of course, it left me rattled. How can you go from being so calm to this, I asked myself? Then, I remembered through my research on this, once the brain starts to die off, there will be sudden short circuits. When these occur, it means that a portion of the brain has been destroyed, therefore, leaving what's left in sort of a state of shock. Thus, it will short circut. Eventually, it adjusts, until it hits again.

The rest of the week was spent watching him closely. He had his moments of complete utter confusion. Lost his cane, eventually found it, wanderded in the garage alot, couldn't find him one time. Then, I looked out the sliding door to the backyard, and there he was, sitting on the patio, looking around as if to say, "Where am I?" Told him to come in and, at first, he didn't even recognize me. That scared me. He did come in, then went to sleep.

I hit a wall by Thursday. Yesterday was not a good day. I felt so alone, lost and sad. I can't let that happen. I have to be the everything.

I went to the pharmacy the other day and, as I was driving, I was looking at houses, wishing I lived in their house. They looked so perfect. Anywhere but here, Lord, I said. Knowing full well that everyone has a cross to bear. Then, I looked out towards the airport as I topped a hill. A plane had just taken off. I imagined I was on that plane going anywhere but here. Escape.

I can't escape. This is my life whether I like it or not. Who could like this? Who would want my life? Folks, be glad you're not me. I'm not even glad I'm me.

"This too shall pass". Of course I know that verse. It doesn't make it easier for me in this moment. Today I will clean house, do laundry, all the things that I normally do. All the while thinking, "Anywhere but here, Lord." Just give me a moment to catch my breath.

Friday, October 14, 2011

Sweet Dreams

I had a dream last night that husband and I, along with about 6 other people were the only ones left on earth.

We were walking through dirt and ash. Husband was well, walking like he used to. As we were walking, I was crying. My children were dead, my grandchildren were dead, my mother, sisters and brothers. Everyone was gone except husband and I.

Then we learned that a nuclear bomb was going to go off at any minute. Only two would be spared, but, we did not know which two. I was so scared that I was going to die that all I could do was cry.

Walking toward this metal building that was the only thing left standing on earth is where they housed this bomb. We all had to walk towards this building. I don't know why.

Then, I woke up.

I have felt so lonely this week. It's no wonder I had a dream like this one.

I don't want to dream like that again. Ever. The feelings I felt in this dream were so real I can feel them now. It has made me sick to my stomach.

Wednesday, October 12, 2011

Not good

Let me just say, we did not have a good day yesterday. Husband has been in and out of the the here and now.

Please bear with me as I adjust to this new situation.

Prayers would be welcomed.


Monday, October 10, 2011

New job

Husband seemed more stable as the day wore on yesterday. Last night was rather pleasant.

At our church, they have a ministry called The Pit Stop. Members meet at the church every 3rd Saturday of each month. There, people who cannot afford car repairs will come, and the team will fix their cars for free. These men are mechanics or just very good at mechanics.

Husband was very good at mechanics in his healthier days. So, he got one of the leaders of this group aside yesterday and volunteered for this service.

Now, husband cannot walk anymore, his mind is gone, but his heart was in the right place. He told Dave he has tools galore. Bless Dave. He glanced at me, and, not missing a beat said, "Well, Leon, we have need of someone passing out tools, could you sit and do that for us?" Husband got quite excited, said yes. Dave told him to be at the church this Saturday at 7:30 AM. He thanked husband for volunteering, saying that they were looking for someone to have this "special position".

Husband is beyond excited. He feels important again. He feels needed and wanted. Said he has to get out one of our camping chairs so he can sit and do his "job".

It is so nice that people accept husband for what he is now. They didn't know him before, but, welcome him anyway. People at church will stop him and talk with him. They don't get any sensible answers, but, care for him just the same.

I am so thankful for this church. While they can't cure husband, they sure make him feel welcome and wanted.

So, husband will go on Saturday morning. He will pass out tools. He will feel important again. He will smile. He will forget and get confused too. Other's may have to tell him over and over things he will forget within a few minutes. Husband won't know the difference. All he will be thinking is he is needed and doing something good.

And, he will be happy on that day.

Sunday, October 9, 2011

Run away.........................

I am feeling better today. After cleaning and a shower, I got into bed and rested. Spent most of the day in bed. Around 7:30, husband got upset that he couldn't watch "his" TV in the bedroom. So, I got up and came out to the living room to watch a movie with Jack.

The chilli I made turned out great. It was really good. Jack ate 3 bowls.

We did not make it to church last night. Going to the 11:15 services this morning. Husband is up and was worried we wouldn't go. He worries about even the smallest of things.

Husband is still in a place I don't like. He is irrational and irratating. I know he can't help it, but, it still. drives. me. nuts. Nothing you say to him will stop this type of behavior. All I can do is get through it.

Usually, when he gets this way, I try to avoid him at all costs. If we ignore it, it lessens. If we make a big deal out of it, it gets worse.

Husband was talking to a "visitor" in the night. I turned over to "see" who this "person" was, he stopped talking, as if I interrupted him. Didn't see anything, turned back over and he continued talking. His voice was soft, and there was no mumbling. I understood every word he said. He was telling someone about his Dr visit the other day. He now says he doesn't remember what he was talking about, but he was talking to "someone".

I hate this disease. I hate what it's done to him. What it's done to us. I have to treat him like a child. I hate that. He hates that. When he is somewhat "with it", he realizes that I am treating him like a child and it makes him angry. He will lash out at me.

I didn't sign up for this. Don't want it. But have to accept this is my lot in life. I don't know why. I don't question that anymore. I do what I have to do. But, don't expect me to like it. Today, I am frustrated and angry. Angry at everything. I can't show it, it will upset husband. All I can do is recognize I am angry, work through it, get through another day. Just the mere thought of dealing with him today makes me want to run from my house screaming. But, I won't. I'll smile and do what is expected of me.

Saturday, October 8, 2011

Not a good time to get sick

For the past few days I have not been feeling so great. Feel achey, run down. It could be a number of things. My nerves for one. Or, the sudden drop in temperature. It rained all day yesterday, cold and damp. I cannot seem to warm up. I attempt to do something, but the aches start. I put some beans in the slow cooker last night. Going to make chilli. Let's hope the other ingredients get in there. Even as I type this, my hands ache. All I want to do is crawl into bed and sleep.

I do not like it when I get sick. Husband drives me crazy when I do. If I ever do go back to bed, which is rare, he will constantly come in and ask me questions. It's like he's scared something will happen to me and who will take care of him.

Husband has not been in a good mood since late yesterday morning. Grouchy, and wanted to argue with me all day yesterday. He was in such a good mood yesterday morning, but all that changed. I just never know when he is going to take a turn for the worse. It happens so suddenly, even after all this time, it still takes me by surprise. And I don't like it.

He is quiet this morning, but all that can change with the drop of the hat. I am always waiting for the other shoe to drop with him. He is angry for some reason. It could be the result of him going to see the Physical Therapist, and discussing his disease. He does not like to talk about it at all. Likes to say there is nothing wrong with him.

Don't know what today will bring. I need some rest, but know he will not let me have rest. I will have to ignore whatever is wrong with me, to care for him. That's the way it is now. Will make myself a cup of tea, clean my house, take a hot shower and try to get a nap. There is no time for me to get sick. We run on his time now. If he's good, we are good. If he's bad, we suffer. Like it or not.

Friday, October 7, 2011

Physical Therapy

I took husband to see a Physical Therapist yesterday. Am I glad we went. She examined him, put a Gait Belt on him, walked around a track, conferred with another specialist, then, came to talk to me.

She told me that his toes are curling inward, the ankles do not move anymore. The knees, when he attempts to walk, have spastic movements, then lock. She said the reason for all the falling down is that his toes don't lay flat, the ankles are locked up and the knees are very spastic, so, he falls. When he tries to bend his knees, they become spastic.

She wants him to see an Orthotist and, together, they will devise a plan to aid in his walking, for now. She did suggest leg braces to wear during the day. She said they would be most helpful.

It's a good thing Susie (Tyler's fiance) works there. Otherwise the waiting list to get in to see a Physical Therapist is 6 months. We got in in 1 month. Susie pulled some strings, that's for sure. The Physical Therapist laughed about that, said yes, it pays to know people, but, she said, husband's condition warranted him to be seen ASAP.

The thought of braces makes sense. She said they use them for people with Cerebral Palsy alot. Husband has some of the same issues as someone affected with CP. The only difference is, his condition continues to get worse.

When the other specialist was examining husband, she was asking him to do the simpliest movements. "The look" is back, so he didn't understand what she was saying. Then Debbie (our PT) whispered and said, "Frontal Lobe Dementia, talk to the wife". Guess it dawned on her there was something wrong, she just didn't know what.

On the way home all he talked about was how they were going to "cure" him. Didn't see that one coming. My brain screamed "WHAT?", while my heart broke. When we got home, Tish had called, so I called her back. He wanted me to tell her that they had found a "cure" for his walking, that he was going to get braces and everything is going to be fine now. Of course I didn't.

Last night, as I got into bed he started in talking about it again. What do you say? How do you react? Good thing it was dark, didn't want him to see my face. So, I did what I thought was right and agreed with him. What's it going to hurt? If he wants to think that, then so be it. If that makes him happy, I can go along with it. Let them "cure" him, I thought.

Today will be a good day, as husband thinks he's been "cured". And I will go along with that. He's smiling today and playing with the dogs.

Thursday, October 6, 2011

Seasons of My Life

Sgt V called Jack yesterday. Because of Jack's high score on his ASFAB, he was able to pick what he wanted to do from a very large list. His first choice was Aero Jet Maintenance. He got it. He will head up the crews on the job. He will travel the world. The world is waiting for him. He will be a fine, solid young man.

To me, he will always be my baby. The last one. The little surprise when I took the pregnancy test, in a joking manner and it said, "pregnant". What? Nine months later on a hot August afternoon, I met my Jack. Bouncing baby boy to say the least. 9 lbs 7 ozs. He was the talk of the maternity ward. They kept him in the nursery for quite a while. When I asked what was taking so long, the nurse said, "he's ordering a green chille cheeseburger". They had to go to Pediatrics to get bigger diapers. The smaller ones were cutting into his legs. So big, so beautiful and so so precious.

He will be leaving in Sept 2012. One month after his 18th birthday. That's it, it's written in stone with the US Air Force. Final. Be still my heart.

This is great news. I am so excited for him. The world at his fingertips. I just wish it were under different circumstances. His dad is dying. He may not ever see him again.

How this will affect husband, I don't know. I hope he is alive still when the time comes for Jack to leave. He may not even know he's gone. Who knows.

When we told husband last night, "the look" was back. Eyes glazed over, that blank, haunting look. Ugly. He smiled and said how great that was. But, I could tell he didn't understand the whole concept. I know this morning he will ask me questions about it, because he won't remember last night. So, I will tell him over and over today what Jack will be doing, when Jack will be leaving. It just won't make sense to him anymore.

My life as I know it will change. I can feel it already. There is a new life waiting for me, a different kind of life I have never known. No kids, no husband. Will I like this new life? Tish said one time, "Maybe you'll meet someone, Mom". No, no thank you. Been there, done that.

So, on to the next chapter of my life. I don't know where it'll take me. The memories of husband will be enough to sustain me. I loved and was loved. I was the lucky one.

Wednesday, October 5, 2011

Questions for me

It poured rain all day yesterday. Very chilly. I started out with all the doors and windows open. Slowly, throughout the day, windows were closing, windows on the storm door was closed, my capris turned into long pants, socks were added and, finally, a sweater. When I went to bed, it was still raining, so I fell asleep to the soud of rain. Peaceful.

Husband seems OK. Was confused several times yesterday. A little on the grumpy side. I had some split pea soup for dinner. He liked that. Seemed quiet but relaxed by dinner time.

His legs are getting very stiff. He had alot of difficulty getting from the bed to the bathroom last night. His legs looked like two boards trying to bend. It's pitiful watching him attempt to walk normal anymore. You can see the struggle on his face.

When he stumbles, he always makes an excuse as to why he stumbled. Says the carpet wrinkled up, the dog made him stumble, he couldn't see because it was dark, someone got in his way, and so on. I don't say anything, just let him vent.

I don't believe he has accepted he has this disease. There is still a struggle going on inside him. Who can blame him?

It might be easier when he gets so far gone. He won't know anything anymore. Therefore, he won't fight it as he does now. Then, I feel guilty for feeling this way. How can I "look forward" to him not remembering anything anymore? What kind of a person am I?

I have to shake myself when I get these feelings of guilt. It's not that I want him to die, I just don't want him to suffer anymore. Is that OK to feel this way? Don't know, but it's the way I feel.

Last night, husband fell asleep early, Jack fell asleep early, Kristen was at work. I sat here alone, watching TV. I felt alone. It was not a good feeling. Then, I started thinking, (not a good thing for me), one day I will be alone. I will watch TV alone, eat alone, live alone. Can I do this? Or, should I move with Tish & Jace? Still so many unanswered questions for me.

When I got up this morning, the questions came at me again. In a weird place today. Gonna have to let time take care of itself.

Tuesday, October 4, 2011

To Be Alone

Woke up to gloomy skies and chilly weather. I love rainy days. Nothing like hunkering down and listening to the rain.

Husband has remained the same. Lots of confusion. He was wandering again in the night. On Sunday, I called in his Rx for the anti-seizure med. He followed me all of Sunday, reminding me to pick up his meds Monday morning. As soon as he got up yesterday, he was once again reminding me I had to go get his meds.

I left him at home with Kristen. Because it's a controlled substance, I can't pick it up at the UNM Pharmacy near my home. Have to go to the main hospital pharmacy. That place is a zoo. When I got there, the parking lot was full. As I got inside, it was standing room only. I took a numbered ticket, looked at my number, looked at the board to see what numbers were being called. They were on 557 and my number was 594. Lovely. At least I was alone. Didn't have to answer questions to anyone. I savored the time, not talking, and just observed all the crazy people there.

I sat next to a lady who did nothing but swing her legs and say, "shit", over and over. So, for 40 minutes or so, I meditated to the sound of "shit". Actually, it was OK because I got to be alone.

Since husband doesn't have to remind me of his meds anymore, he has been a little better. The eyes are blank. Empty looking. When I was cooking dinner last night, he stood right by me, watching my every move. I finally told him to leave the kitchen and he got mad. Real mad. Shuffled off to the bedroom where he pouted for a few minutes, then, came back and hovered around me again. I felt like I was being suffocated.

These times are really hard on me. I sometimes don't know if I'm coming or going. I hate this. Today I am hoping I can take him to his dad's. That gives me some alone time that I crave.

We go on Thursday to Physical Therapy. Let's hope they give him the four pronged cane he needs. Or, decide a walker would be best. I have noticed his left arm is starting to look spastic. He almost fell at church Sunday. Kristen caught him before he fell. He was very upset about that. It must be so frustrating for him. I feel so bad for him. I see him struggling to walk "normal" like the rest of us and it breaks my heart. He looks pitiful. People stare at him. He sees them, I see them. The look they give him hurts me, for him. One day I will say something to those who judge him by the way he walks.

He was once a fantastic husband, a doting father. An avid fisherman, hunter and loved nothing better than to go to the mountains. What he is now is awful. It's all I have left of him.

So here's to a new day. A day filled with many questions, frustrations and confusion. Ready, set, go.

Sunday, October 2, 2011

The Days of My Life

Not much news around here this morning. Yesterday was heavy house cleaning. My house sparkles. Made an early dinner then off to church.

I decided not to continue with the Support Group I joined earlier this summer. There is a small group at church that meets at a house every Friday. In this group, there are people who are struggling with finances and everyday living. Jackie and her husband (I forgot his name) head this group are very nice and down to earth. I believe I will fit in better with this group. Husband will go with me, as it is a couples support group. There is also another group at church that is for people who have lost or are losing a loved one. That one meets every Thursday night. I am going to check that one out as well. Jackie told me about this group, said I would benefit from this.

Husband has stayed pretty much the same for the last few days. He can always sense that he has pretty much worn me out. Seems like he backs off. The questions continue to come, I repeat myself over and over, he does things that rattle me and, just when I get to stroke level, he will back off a bit. Funny how he can sense that he has taken me to the brink. Maybe it's because he realizes what he has done? I don't know.

Woke up in the middle of the night. Husband was not in bed. Was wandering around in the house. He came back to bed and fell asleep. I started to think about all the what if's. What if he went outside and got lost? What if he started driving? How can I lock him in the house? His mother used to wander. She would take her clothes off, then go walking in the neighborhood. My father in law would be called at work, have to leave work and go find her. Until he brought someone in to stay with her during the day, this happened alot. I remember that. Is it starting? Will I wake up one morning, finding him gone? What do I do? I gave up and at 6:30 got up and made an espresso, still thinking. Husband got up with me. He is quiet this morning, maybe he is thinking too. Maybe it scared him too. I won't bring it up, it will only upset him.

These are the days of my life now. I am always comparing him to his mother lately. Maybe because when I came into the picture, she was in the last stages. She couldn't walk anymore, memory was poor at it's best. Husband would sit with her on Saturdays so father in law could work. He would come home and tell me about his day with her. He would be upset that his mother had turned into a helpless child. And, I remembered what he said towards the end of her life.

He had a particular hard time with her that day. She did not know him anymore, kept asking him to leave, as her husband would be home soon and she needed to "straighten up" the house. Husband told her he was her son, "Mom, it's Leon", he told her. There was not a hint of recollection in her face.

When he came home, after telling me all of this, he said, "Man, if I ever get that, take me in the back yard and shoot me in the head".

I often think back to that day. He did get it. He's like her now. And, he knows he will die. He isn't that far gone........yet. He will be, soon enough. There's one thing I will not do. I will not take him in the backyard and shoot him in the head.

Saturday, October 1, 2011

Bring It On

This rather "normal" period we were having has come to an end. Husband started to decline on Thursday. Makes me sad. Husband has been so lost. By yesterday morning, he didn't know if he was coming or going.

I had to run errands yesterday morning. Bank, Pharmacy, WalMart, Petco and Costco. All just for a few things at each store. Said I would be gone for a few hours. I needed this time alone. He would only be able to make it through 1 store, so that would mean I'd have to leave him in the car while I did the rest of the shopping. I am not a shopper. I go in, get what I need and leave. But to leave him in the car is not good. So, I told him to stay home and I'd hurry. From 6:30 AM to 7:45 AM yesterday morning, I told him 5 times where I was going. By the time I took Jack to school, I was frustrated from repeating myself. I told him I'd be right back, eat breakfast, then leave around 9:00 AM.

When I pulled in the driveway after taking Jack, he came out of the house, trying to walk fast, almost falling in the process and got on the passenger side of the car. I rolled down the window, thinking something bad happened. I say, "what's wrong?" "Nothing", he says, "Where is all the stuff from Costco?" I take a deep breath, "Honey, I took Jack to school, remember? I'm not going until after 9." "But, you said you were going to Costco." Ugh. That's how my day yesterday started.

I mentioned earlier this week that the garbage disposal had plugged. I was still having issues all week. Got some Liquid Plumber. When I got home, I poured some down the drain. All the while, husband was telling me it wouldn't work. And silly me, I am trying to explain to him how it would work. Don't ever try this at home folks. It could be damaging to your mental health. After about 15 minutes, the clog was clear. He looks at the drain, all clear, picks up the container of Liquid Plumber and declares it a miracle. He then goes to Kristen, telling her all about this miracle stuff that healed the garbage disposal. She looked at me with such sadness, I looked at her sternly, giving her that look that said, "just go along with it." What an actress she is. She smiled and told him how wonderful that was. As she was helping me put away things, there were tears running down her face. It always affects the kids this way.

OK, bring it on. I am ready for it. I don't like it, but, here it is. Cherish what once was, deal with what I have left.