Husband's last camping trip

Husband's last camping trip

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.

Monday, November 7, 2011

The adventures of my life

We had a very nice quiet Sunday. I had time to dig deep, think and made a very important decision.

I have to go back to work. There it is, I put it out there. Actually, I made the decision Friday, but gave myself time to digest it. The idea of going back to work appeals to me now. Before, it made me cringe. So, I believe the time is right now.

I updated my Resume and will start applying today, online, for a job. I usually don't have any problems finding work, but, with the economy the way it is, I may find it harder this go around. I am hoping there is something out there for me. I can no longer afford to be home.

Starting in December, husband will be on Medicare. The cost is $115.40 per month. They will be taking that out of his Disability check. With my budget being what it is now, that's alot. I have had to adjust my budget. There just is not enough money to go around. Then, Christmas is coming. Not that I spend, spend, spend. But at this time, there will be nothing for Jack under the tree this year if I don't find work.

There is an adult day care near my home. Husband will have to go there. I won't have to pay because husband is terminal. Perks of being terminal, I guess? He won't like it at first, but will get used to it. There is nothing else I can do at this point. They have workshops there. Husband will be kept busy.

How ironic that for many years, I had children in day care. Now, I have to put my husband in adult day care. Some joke; it's not funny anymore.

Today is the day I start my job search. Who knows where it will take me. Who knows how long it will take me. All I know is, I have to go back to work, I have to see to it that I take care of my family and, I have to put my husband in day care. It's not the going back to work that bothers me, it's the idea of putting husband in day care that bothers me. What a blow to him. How did we get here?

I am hoping there is a company out there that fits my needs and I theirs. All I can do is apply, apply, apply.

On to my next adventure.

Sunday, November 6, 2011

My Saturday

Yesterday afternoon, husband asks if Jack is taking the car to the movies. I say yes.

15 minutes later he asks the same question.

Soon after that, husband asks if Jack is going to the movies. I say yes.

Husband takes a nap.

When he wakes up, he asks me if Jack is taking the car to the movies. I say yes.

Jack goes to the movies. He has to be home by 10:00 PM. I mention (why, oh why do I do this?) to husband that Jack has to be home by 10. Husband nods his head, turns to walk down the hallway, turns back around and asks me if Jack is coming home tonight or spending the night with his friend.
I sigh, husband catches the sigh and says, "You don't have to act that way, all I'm doing is asking a simple question." I apologize and tell him yes, Jack is coming home.

10:00 PM, on the dot, Jack pulls in the driveway. When he comes in the door, husband says, "Oh, mom told me you were spending the night at T's house." Jack looks at me, I just roll my eyes, he tells his dad no, he was never going to spend the night with T. Husband looks confused.

And that, ladies and gentlemen, was how I spent my Saturday!

Saturday, November 5, 2011

Baby, it's cold outside

I heard on the news last night we were going to have our first winter storm of the season. Wind, snow and rain. I woke up this morning to wind and rain. So far, no snow. As long as I don't have to go out in it, I'm OK. Problem is, I promised Jack he could take the car to the movies, then, go to his friends house util 10:00 tonight. If it snows, I can't let him go. He doesn't know how to drive in the snow. Actually, it's not him I'm worried about. It's the other drivers.

Here in the Land of Enchantment, (or, as I like to call it, the Land of Entrapment), when the weather man advises you to stay home, the crazies decide to see how fast and how far they can go without crashing. I have driven in this snow and ice. It's not fun. These people scare me. They have no sense. Even in the best of weather, they still scare me. Let's hope we have no snow, or, that the wet streets don't freeze tonight. That's always fun.

Other than that, not too much happening here. Husband seems OK, for the most part. I have noticed though that his memory is not there anymore. He used to only have spells where his memory would fade. But, this week, I've noticed it's always faded. There's always a memory lapse.

This past week, I have reminded him of things throughout the day. It didn't used to be this way. Everytime he does something that is new, I think back to my year of research on his disease and remember reading about a certain symptom, then, watching it happen to husband before my very eyes. It always makes me catch my breath.

This disease is tricky. Everyone is different, but the same. Sounds crazy, but true. I don't know how else to explain it. They all go through the same things as the brain shuts down, but, at different intervals.

On some of my worst days with husband, I often wish he had cancer. That way, there would be a chance at survival. We would treat the cancer. We would have hope. With Frontal Lobe Dementia, there is no cure, there is no hope. Also, with his rare condition, (running on his mothers' side of the family, striking at a relative young age, with a 3 year life expectancy), makes it all the worse. We don't know when he will die. All we can do is look at the family history. All died by their 47th year. Husband is 46. Not good.

I sound so dark, so depressing. I'm not usually this way. But, there are some days I think about the odds against husband. Some days when I wake up, I look at my husband sleeping, thinking back to happier times. Times on saturday mornings where we would go as a family, somewhere, anywhere.

And I wonder, where did it all go?

Friday, November 4, 2011

New shoes

Shopping with husband yesterday was rather pleasant. Usually, he cannot make up his mind, cannot make a decision and it gets us both frustrated.

When we walked into the shoe store, he got confused, made a few circles, so, I spoke softly to him and told him to follow me. The wide variety of shoes overwhelmed him. He began to get upset. I immediately picked up two pair, each different, led him to a stool to try on. He chose one style. He walked around and around for about 20 minutes in the new shoes. He said he liked them.

Quickly, I gathered his old shoes up, put them in the shoe box, put the other shoes on the shelf and we headed to check out. He began to get confused again, so I told him that he could wear his new shoes home. He got excited about that.

All the way home he kept glancing down at his new shoes. Repeated to me how much he liked them. He smiled alot during the ride home. Made me want to laugh and cry at the same time.

Once we got home, he said he could walk without his cane to the front door. "I've got new shoes, they will help me walk good again", he said. I told him to use his cane, please. He wouldn't. He walked to the front door without his cane. As he did, his arms were outstretched like he was walking on a tightrope. He had a big smile on his face as he walked to the door. All the while, I'm holding my breath watching him do this. All I could think of was him falling and hitting the concrete driveway. He didn't, but, it sure scared me.

When we got inside, I told him that he walked so good without his cane to the door, (OK, so I lied, stay with me folks) imagine how much better he could walk with new shoes AND his cane. His smile became even bigger and he said, "Oh yeah, I can, can't I?"

All afternoon, he walked arund the house WITH his cane in his new shoes. Couldn't wait to show Jack.

Those shoes are normally expensive, however, I got them on sale. He asked me 1,478 times how much I paid for them, that was a good deal, right?, he asked. All. Day. Long.

When I got into bed last night, he asked me, "How much did you pay for the shoes?" I told him. He said, "That was a good deal, huh?" "Yes, honey, it was", (a little weary by this point) I answered.

Today I know he will want to go show his dad his new shoes. I just know it. We will do this all over again today. I will repeat myself until I feel like I am a blithering idiot. Jeez, maybe I am already?

Thursday, November 3, 2011

To live in my house

Today, I am taking husband to buy him a new pair of shoes. He is excited like a kid starting school.

When Jack got home from school yesterday, husband said, "Jack, mom is getting me a new pair of shoes tomorrow". Jack is so cool. He smiled and said, "hey, great dad". Husband looked so proud. As Jack walked away, the look on his face said it all. That was sad.

Why does my son have to see this? Why can't my son have a real father? Why has my family been "chosen" for this journey? Who knows.

I sometimes do question this. It's not that I get on a "feel sorry for us" kick, it's just questions I have to ask. It keeps me from going insane.

I sincerely hope that you will not have to go through this. Whoever you are out there in Blog Land. The horrors of this disease will leave scars on us that can never be erased.

One of the symptoms of the brain dying is they lose control of their bladder. Husband has wet his pants many times in the last month or two. He hides his wet underwear, sometimes in the hamper, sometimes in the bathroom cabinet. Yeah, he does this. Everytime I find wet underwear, I want to sit and cry. He is ashamed. The last time it happened, I told him to tell me when it happens, so I can wash the underwear right away. He didn't understand.

Imagine how he feels when this happens? I can't. Does it scare him? Does it make him sad? He will not tell me. I don't think he knows how to anymore.

A few weeks ago, he was in his underwear and I noticed a wet spot. I pointed it out to him. He looked confused.

Husband is up early this morning. Got up, dressed himself and is eating a bowl of cereal. Is excited for today. Until I take him to get these new shoes, he will ask many times when we are going. I will answer many times.

We will go to the shoe store. "The Look" will come back. Too many choices, too many people, too much. I will pick out many pairs. He will not be able to make his mind up. It will take time. Finally, he will choose a pair. All the way home, he will question himself on why he chose that pair. Ask me if he did the right thing. Will start to worry that they will not fit, he won't be able to walk, he may get blisters, maybe he should've chosen the white ones or the black ones.

All the while, as I'm driving, I will soothe him, talk to him, reassure him.

When Jack gets home from school, I know he will tell him, "Jack, look what mom bought me". Jack will smile, probably say great choice, dad, then, walk away with that oh so sad look on his face. Huband won't notice. He'll be too busy staring at his new shoes.

Oh, to live in my house.

Wednesday, November 2, 2011

A new & improved me?

Nothing new to report. Husband seems OK, for now. We have many memory lapses throughout the day, but I've gotten used to it. No longer do I brace myself. If I see he has "the look", I roll with it. He usually comes out of it in a matter of a few hours. We pick up where he left off, if he can remember where he left off. I'm learning.

The Physical Therapist called the other day. Said she wants to see husband on a weekly basis. She said that the muscle weakness in the legs is progressive, (I knew that), but, she can help for now. I told her that by taking him to her each week will help him feel better about his disease. I also told her that he has not accepted his fate and is angry about it. He will go once weekly beginning on the 18th of this month. When I told husband, he got excited about it. We made the right decision.

I am in the process of learning about myself. I realized last night I have a long way to go. Life isn't always a bed of roses. Life can be cruel. My life now at times does seem cruel. I try each morning to gear up for the day. If it goes well, good. If not, I am learning how to cope. Some days I do well, other days not so well. I recognize it now and try to pace myself. I am learning how to deal with my anger. I have issues with anger. But, when I recognize I am getting angry, I now talk myself down. It's beginning to work. I am a work in progress.

I will never be perfect. I will always have issues. Who doesn't? For now though, I am learning more about myself and what makes me tick.

I realize in order for me to help husband into this slow decline, I have to help myself first. I have to take care of me. Otherwise, I am no good for husband. Yeah, it's looks good on paper. I do try hard each day. It's like learning a new language. One day though, it will come second nature to me.

I have to accept me as me. I can't be what other people want me to be. I have to be me. But, I have to improve me. I want to feel comfortable in my own skin.

One day I will accomplish this. Probably not in husbands' lifetime, but in mine. My hope is that when husbands' time comes, he will know somewhere in his mind, that I tried, I really, really tried.

Tuesday, November 1, 2011

On Strike!!

Last week, I went on strike. I did not cook for a week.

I served this delicious dinner last Monday night. Husband & Jack refused to eat it. They had never tasted it, but said they did not like it.

That really hurt me. I told Jack he ought to be glad he has a mom that cooks for him. That wants him to have good meals. That takes the time to prepare delicious food, even on my budget. Nope, he wasn't going for it.

Husband, on the other hand, agreed fully with Jack. So, I told them I was done cooking. Said they could fend for themselves. They seemed excited about the prospect of eating whatever.

One night, they had muffins for dinner. Another night, I think it was toast. They would glance at my dinner, looking hungry, but, knew better than to ask for any of my food. Teach them, I thought.

What a wonderful week I had. I praised myself for being such a good cook. Patted myself on the back. Smacked my lips as I ate. I stuck to my guns.

On Sunday, Jack asked me if I was going to cook. Told him I was making MY dinner, but, if there was enough leftover, he was welcome it.

To make a long story short, I made enough for them. As they were eating, Jack praised me and my cooking. Said I had cooked the meat perfectly. Said it was the best he had ever tasted. All husband could do was eat and nod his head. After dinner, they both thanked me for the dinner. I took it all in stride, the whole time smiling to myself.

I cooked again last night. I got praises all around. A very simple meal, a poor man's meal. One would've thought Wolfgang Puck made it.

Proud of myself for sticking to my guns. The crazy part is, after hurting my feelings, I could've cared less what they were eating. The night Jack had a muffin, he walked by me as I was eating my dinner. To rub salt in the wound, I told him how delicious that muffin smelled. If he could've gotten away with it, I'm sure he would've told me to go to hell.

So, I'm back in the kitchen, but, they know now if they complain, Mama's gonna go back on strike. Wouldn't bother me in the least.