Husband's last camping trip

Husband's last camping trip

Wednesday, August 31, 2011

a Fall and a Song

I always get up before anyone. I love the quiet time. I need the quiet time. As I was sitting on the couch, husband decides to get up earlier than usual. Came down the hallway, into the living room and fell flat on his face. I fly up, asking if he's OK, all the while my heart is in my throat. "It's really happening, this is really going to happen", I think to myself, after putting my heart back where it belongs.

I have seen husband fall a number of times the last several weeks. But, it never gets old. That feeling of seeing him fall, so helpless, face down into the carpet. It makes him mad. Mad at everything. I can't blame him.

I mentioned again that maybe he should use the walker. Of course, he says no. I know how he feels. He doesn't want to give up the last ounce of dignity he has left. He hates that walker. I got it out of the garage and he put it back in the garage.

Took Jack to school. On the way back, for some reason, I turned on the radio. Since diagnosis last year, I stopped listening to the radio in the car. Tuned into a Soft Rock station. They were playing a song I love. Unchained Melody by the Righteous Brothers. And I started to cry, big, racking sobs. Could hardly see to drive. I don't know why I did that. Maybe because the past week has been really rough on me. By the time I got home, I was OK. Emotions.

Tomorrow, I go for a check-up. My Dr knows all about husband. He is the one who referred him to Neurology, way back in 2009. Keep thinking I need something to help calm my nerves. I don't want to take anything, but something has to give. Will have to see what he says.

Today, I will try to keep calm. Husband has not moved from his chair since he fell. Is he afraid of falling again? Probably. I have to keep really close watch on him now. All the searches I've done the past couple of years say this is the beginning of the end. Once he cannot walk anymore, he will be bedridden. Then, it'll be all downhill from there.

All because of a tiny microscopic gene. A gene that does more damage than an atomic bomb. A gene that kills. A gene that is now in full force in my husband's brain. Killing him.

Tuesday, August 30, 2011

Mothers & Funerals

Yesterday was a lovely day. Husband at his Dad's, all day long. Got my laundry done, relaxed and watched some of this trial that's being played now. Interesting. I watch a lot of TruTV, it's all about the legal system, and they show trials, past & present. Anyone hear of Casey Anthony? I was glued to that TV for over 8 weeks. Riveting trial. Keeps me updated. Want to know what's going on in the outside world.

My new world consists of watching husband for signs of seizures, choking, giving medicines 4 times per day, making sure he eats proper, make sure he does not hurt himself, make sure when he falls, he is ok, make sure that he has enough fluids, make sure he doesn't fall while in the shower, make sure he is not having any side affects to the high power meds he is on, make sure I make his Dr apppointments, make sure he is comfortable.

I also, clean house, do laundry, cook, grocery shop, pay bills, budget and hold the household together. Oh, yes, there is also a young man to care for too. Jack is and has been wonderful through all of this. I can see the anger he feels, but, we talk about it, I make sure he understands what his dad is going through. But, I can see the longing in his eyes to get out of here. I know he can't wait until he leaves for Basic Training. He doesn't have to say it. I know my child. I am sure he is counting the days until he leaves, 10 months from now.

The other day, Kristen and I were talking and husband comes shuffling in the living room. Sits down and says to Kristen, "So, where are you working at now?" "Uh, same place I've been working all along", she says. I told her to get used to this, as it happens alot lately. I am used to it because I am with him daily. It still catches me by surprise, but I recover quickly. I have to, otherwise, if you show surprise, it scares him. Once he's scared, it seems his brain short circuits, and off we go to another place.

I am debating going to a funeral this Friday. It's the mother of one of my Support Group members. She was 70 yrs old, she had Dementia. She suffered alot. At the last meeting, she was telling us of her mother's condition. It was awful. Her mother no longer knew anyone, not even her daughter. Imagine that. My mother-in-law knew no one at the end, only my father-in-law. Not even her only child, my husband.

My mother-in-law stopped talking a few months before she died. When we found out our Jack was on the way, he wanted to tell her. Once he walked in her bedroom, she appeared to be asleep. He sat down, she opened her eyes and he told her she was going to be a grandmother. She smiled and whispered, "I know". She died 5 weeks later.

I think I need to go to this funeral. Show my support and all. Husband will have to be told where I am going. I don't like to upset him. May have to make something up. Kristen will come and sit with him.

This Support Group is wonderful. When husband's time comes, I will want them there. So, here we go, the first of many funerals.

Monday, August 29, 2011

Digging Deep

Been a rough couple of days. Husband has been on a downward spiral. It started on Thursday, with no end in sight. He seems to be OK this morning, but, it can turn bad quickly.

By yesterday afternoon, I was so jittery, I was almost in tears. I had to have peace & quiet. I felt like I was going to just crawl out of my skin. I orderded him to the room. Told him to go in his room and don't come out until he could behave. He did as he was told. Stayed away from me. I made dinner, he ate, never said another word, went back to bed. From there on, I was able to relax and calm down somewhat.

Who does this? Who talks to their husband like he is a 4 yr old? Who makes their husband sit in his room until he can behave? I do, that's who.

Anyone know how hard this is? There are alot of women who have cared for and are caring for husbands who are disabled, I get that. But, when you have a husband who is not only disabled, but is loosing his mind also, that makes for one interesting life. I won't quit on him, no, but I surely need a break from him.

There are times that I resent him. How dare he do this to me, to us. There are times I can't stand to be around him. There are times when all I want is for this to be over with. There are times that I want to walk out that door and not come back. But, guess what? I don't. I continue what I do, take care of him.

By joining this Support Group, I found out that it's OK to have these feelings. They are normal. So, I'm normal. Good news.

Today, he wants to visit with his Dad. I feel like a kid going to the zoo. I get some alone time, I am just too excited. I need it. Already, I can feel my jaw tightening and all he is doing is just sitting here, staring into space. But, that's all it takes. You just never know.

Here we go, new week. I need to find my ground, get centered again. This last episode took me by surprise. Need to brace myself for another onslaught. Gotta get it together. Today, though, I will have the quiet time I need, with Jack in school and husband at his Dad's. And, I will find my inner strength again. It's there, just gotta go get it.

Saturday, August 27, 2011

One Proud Mama

Jack was sworn in yesterday. He now belongs to the United States Air Force. His departure date is sometime in July, 2012. I was so proud of him as I stood and watched him be sworn in. He was the youngest, with the oldest being in his 30's. They all kind of looked at him like a little brother. One of the officers told me that during the long day of physicals, FBI and psychological tests, the other guys were amazed at Jack's maturity and confidence.

Jack's firt two choices of jobs are, Heavy Aircraft Mechanics, (to which he would be the chief, due to his high ASFAB score), or, Nuclear Weapons, top secret job. The 3rd on his list is Air Controlling. Whatever he decides, he will do a fine job. So proud of that boy, or, (ahem) Man.

Husband behaved quite well yesterday at Jack's Swearing in Ceremony. When we were going through the metal detector at MEPPS, the officer told him to put his wallet on the table, then go through the metal detector. Husband did not understand, picked his wallet back up, got out his ID, looked at the officer confused. I looked at the officer and saw his look of, "What are you doing?" I just very calmly said, "Honey, put your stuff down and just walk through." When we got into the main area, we had to be issued badges and sign in. As I was signing in for me, husband whispered, "You have to sign in for me, I don't know how."

Once we got home, husband seemed a little agitated. He is still miffed that I took control of his meds. I ignored him, I have to. He pouted the rest of the evening, didn't like what I made for dinner, but, ate it anyway. He was ignored, it's easier that way. If I continue to cater to him, he only gets worse. So, like I would with a child, I ignore the poutiness, and he quiets down.

This morning, he is still the same. He will be ignored again if he continues. I hate mornings like this, it almost always turns out to be a very trying day for me. Just, drains me. I will be busy with cleaning, washing bedding and hopefully catching a movie on TV. I need to relax. It seems like everytime I want to just sit and zone out in front of the TV with a good movie, he acts up. At least I know now how to handle the situation, but, he is work.

Here's to a good day. One that will end well, I hope. I have to go to the store and, to ease matters, I told him that "we" need to go to the store. He seemed to like that.

One day, this will all be gone, he will be gone. Will I look back and wish he were still here, having temper tantrums, pouting and stumbling everytime he attempts to walk? Will I miss him miserably? Will I be a basket case?

I don't think so. Of course I will miss him and be sad. But the man I knew as my husband is gone already. I miss the old husband. He was a good man. A hard working man. Because of this monster, eating away at his brain, I have been forced to live with a stranger. I have been forced to be mon & dad. I mourn the loss of my husband before he is physically gone.

Friday, August 26, 2011


I just got an email from my Support Group leader. One of the member's mother passed away early this morning. I heard that she was a wonderful woman. A wonderful wife and mother. And this is what she got in the end? Huh, makes me stop and wonder.

Husband had been doing so well, then, of course, out of the blue yesterday, total confusion, agitation, wanting to argue. I had called in his anti-seizure meds the day before and as I was on hold, I started counting the pills that were left. He has not been taking the prescribed dose.

Now, let me stop here and go back to last summer. When they prescribed this drug, I told him I would keep the meds and give to him at bedtime. He fought me on that, said he could do it himself. So, every night, I checked to make sure he had taken his meds. Seems he has not been on the up and up. Yesterday morning, I took all meds from him (there are three now) and told him from now on, I was handling all meds. These meds are for different symptoms, like the anti-spastic med for his spastic legs. That is to be given 1/2 tab 3 times a day. The other, Aricept, is to be given at dinner time. The other is the anti-seizure med, 2 tabs at bedtime. So, he didn't like it, but I took it all. Now, I can be sure his meds are given to him properly. I told him, "fight me all you want, but you will not win". He threw a few fits, I ignored him. His meds are now locked up away from him.

During this time yesterday, I got so mad. Mad that I have to treat husband like this, mad that his son gets to watch this, mad that husband has to go through this. Just mad all around. Ugh, it lasted all day long. And this, folks, is just the beginning.

Jack is, as we speak, doing his physical. When he is through with that, the FBI comes in and grills him. Jack told me last night, "Don't worry Mom, I can handle the FBI". So full of confidence. When he is done, he will call me, and we will be invited to attend his Swearing in Ceremony. I will post pictures on Facebook for those interested. Husband just asked, again, for the upteenth time, where do we go for the ceremony. I told him, again, that it is downtown at the MAPPS Station. He says, "Hey, don't look at me like I'm stupid. You never told me where it is going to be".

I have to be happy for my son today. I will celebrate with him and know that if he gets in, his future will be secure. But, during all of this happiness, I have to watch my husband's future slipping away.

Today will be bittersweet. Sweet, because my son is becoming a man. Bitter, because husband cannot be a man anymore. And that hurts. For him, Jack and myself.

Tuesday, August 23, 2011

Air Force here we come!!

Jack took the ASFAV test yesterday. His score was 81%. They all were blown away by how high it was. Most people get 50-70%. He breezed right through it, he said. Said it was so easy. For him, maybe.

He wasn't able to go to the hotel however. Seems the recruiter forgot to register him at the hotel. So, he came home. As he walked in the door, my first thought was, "uh oh". He explained what had happened, said we had to go to the recruiter's today to sign papers for him to enter the Air Force. As he was talking, all I could think about was, "did he pass?" Then he showed me an envelope. It was sealed, with his grade in it. Said he wanted to wait until he got home to share it with me. As he was opening it, I noticed his hands shaking, just a little. Then, he says, "Oh, cool, I scored 81%". I was overjoyed. When he called his recruiter to inform him of the score, his recruiter said he had never seen a score that high.

Later, he went on the Air Force site. You can choose what you want to go into by how high your score is. With his high score, he can get into anything, except one thing. I don't remember the name of it, it was hard enough to even pronounce. Now, he says, he's leaning more toward Bio Medical something. Whatever he does, he will be great.

As we were talking about going down there today, he said, "Mom, dad can't sign his name anymore. Will you sign for him?" Of course I will.

This is going to hurt husband though. He can't do anything a "normal" father can do. Not even sign for his son to go into the Air Force. And that makes me mad and sad.

This is one of those times where it's bittersweet. My son has become a man, he will be leaving to begin his life in 8 months, it will most likely be the last time he sees his father. Husband looked so proud last night, but, once we get down there, and they ask him to sign, he will look at me like a helpless child as if to say, "help". Some will look at him with pity. Don't pity him, I think, he can't help it.

This is going to be one of those days where I will say in all honesty, "Why? It's not fair".

Monday, August 22, 2011

Becoming a Man

Today, Jack takes the ASFAV test. I have to pull him out of class at 1:30, the test starts at 2:30. I know he will pass. He's not too nervous. When he first went to talk with a recruiter, they gave him a pre-test. Recruiter said most score a 40. Jack scored a 74. After the test, they will be taking them to a Hotel for the night, physical & psychological tests in the morning.

He is wanting to get into Computer Science. He is so smart, things come easily to him.

We had a nice birthday dinner for him yesterday.

Husband seems to be doing ok. Dr A asked me last week if I had noticed husband urinating more than usual. Told him I had. He explained that the muscles are breaking down and the urge to go will increase. That's why they end up in diapers. Great. Something to look forward to. The past few nights, husband has gotten up several times to go to the bathroom. Husband has had a few accidents the last few weeks, just never put two and two together. Now, I know why. Husband says it's because he drinks alot of water.

I call my mother every Sunday. We had a great conversation yesterday. She will be 94 in October. I try to make it out to LA to see her in October for her birthday, but, told her I just can't this year. Finances being what they are, not possible. She said she understood. Told her I would call her alot on her birthday. She liked that.

Today is laundry day. It's still warm enough to hang clothes on the clothes line. I love the smell. It won't be long before the cold sets in, so will take advantage of it while I can.

Here's to a new week. A week of Jack becoming a man and a week of asking myself, "what has husband lost now"?

Sunday, August 21, 2011

He remembered!!

The church we have been going to is very large. So large, that, there are 2 services on Saturday evening and, 3 on Sunday. As large as it is, everytime I leave, I feel fulfilled. The music is fantastic. It is loud, real loud. It's kind of like being at a concert. As the band plays, people clap their hands to the beat of the drums and sing their hearts out. If you can't see the band, there are 3 big screens to look at, plus the words to each song are displayed on those large screens.

The first time we went, I just mouthed the words to the songs. The second time, I clapped my hands and sang a little. Last night, I clapped my hands, moved to the beat of the music and sang my heart out. As I glanced over at husband, he was clapping his hands and trying to move to the beat of the music. Because of his spastic legs, it was a jerking motion, but move he did.

The Pastor is fantastic. His sermons are right to the core, spot on. He also has a great sense humor. Husband so enjoys the sermons.

It's the best.

Husband likes me to read from the Bible each morning now. It soothes him, makes him more relaxed. He asks questions, questions I sometimes don't have answers for. One day last week, husband came to me and said, "I didn't know about all of that stuff you read from the Bible, how Jesus was God, but born to flesh". He remembered what I read!!! All these mornings when I have read to him, he is retaining some. I like to think the Word of God is able to communicate with his soul. Where some people cannot reach him anymore, God is.

When husband's time comes, I know now where he will be going. I don't have to wonder anymore. That's my one and only consolation. He will live again, he will be able to walk again, he will be able to speak clearly again, he will be able to think again. He will be healed.

Saturday, August 20, 2011

Medicare, Birthdays & Acting

Husband got his Medicare card in the mail the other day. As of 12/01/11, he will be on full Medicare. Good news, I guess. It just seemed He seemed excited, said, "That's good news, right?" "It sure is", I said. He had to sign the card. He wrote his first name, but when it came to his middle initial, he said, "how do you make a G?" It was a scribble, that G, but I said it was fine. For some reason, after he is gone, I want to keep that card and look at that scribble that is supposed to be his middle initial and remember the day.

Had a few spells yesterday of mood changing. One minute he was fine, the next he seemed agitated. I have to be very careful at how I speak to him, as sometimes my voice can upset him. Have to measure the level of my voice and think before I speak. Otherwise, I upset him by what or how I say things.

Picked up his 2 other prescriptions Dr A prescribed yesterday. Of course, I had to take him with me. Ugh. When we got back in the car, he ripped open the bag, took out the drugs and said to me with a big smile on his face, "This is gonna fix my legs, I just know it". I just smiled and nodded my head. What else can I say? He tried to read the labels, got frustrated and put them in the back seat.

We went to his Dad's house, his dad wasn't home, so he visited with a neighbor who he's known since birth. This neighbor is old now, and as I watched the two of them, both using canes, both hunched over, it saddened me to think that the neighbor is at least 35 years older than husband, yet, they walk the same. This neighbor knows that husband has the same disease that killed his mother, but, he never lets on to husband he knows. Sad to watch.

Tomorrow, I will have Jack's birthday dinner. Husband just said to me, "Tomorrow is Jack's birthday". "No", I say, "it's Jack's birthday dinner, his birthday was last Tuesday". He just nodded his head, "the look" is there today. We can go anywhere today, I just feel it.

He is, however, looking forward to church tonight. I am too.

Don't know what today will bring, it's always a surprise. At least I can almost tell what kind day I'm going to have within twenty minutes of him waking. So far, he's confused this morning, in a "mood", and I have to play pretend everything is OK.

Missed my calling: shoulda been an actress.

Friday, August 19, 2011

I'm OK, you're OK

Got a call Wednesday morning from Dr A. He wanted to see us that afternoon. I told him we had an appointment on the 31st, but he said he had an opening, so off we went to see this specialist at UNM, but not in the hospital, he is off hospital grounds, in the Mind Science Center. It was easy for us, as we don't have to park underground and walk so far. Husband can only walk a little, then tires out.

Dr A gave him some more tests, cognitive tests. He did ok, but was so nervous, you could see him shaking. Failed miserably, but all in all, Dr was pleased about some of the abilities he still has.

I told Dr about the jerking, vibrating and choking. He just nodded. Dr A was impressed with his upper body strength. Said he wants to push this genetic testing. He wants to be 100% on the Familial Frontal Lobe Dementia. He said he is leaning toward Early Onset Alzheimers, but this type of dementing illness or any type of dementing illness has so many charateristics, he wants to be 100% certain. If we can't get it approved, he said the only choice I would have would be to request an autopsy. Then, he said, we would know for sure. I do want to know if Jack carries the gene, I do need to know if he will be afflicted with it. "One thing, Mrs Lucero", he said, "Whatever name you want to call this, he is terminal, his life expectancy is short, you and I both know that. We will do everything we can to make him comfortable". I just sat there nodding my head, nothing to say, it's all going to end the way we don't want it to end. He is dying.

Of course, husband thought they had made a mistake and gave him prescriptions for the "stiffness" in his legs. On the way home he said, "Dr says there's nothing wrong with me but it's my legs, they are just a little stiff". What? After I brought my car back under control, I just agreed with him. If that makes him happy, then so be it. Let him think that. He seems happier. All he talked about yesterday. All. Day. Long.

Last night I found him wandering in the garage. I asked him what he was doing in the garage at 10:00, he mumbled something I could not understand, seemed to come out of his trance, shuffled back to bed and slept.

How strange this disease is. Wednesday at the Dr's, he seemed ok, next night, he's caught wandering around in the garage, totally confused.

Sunday I am making Jack a birthday dinner. Pat, Christine, Tyler & Susie will be coming over. I hope it will be nice for Jack. He acts so uncomfortable around his Dad lately. I think husband can sense it too.

Have I ever said how crappy this is? Yes? Well, I'll say it again. This is crappy.

Tuesday, August 16, 2011

On Golden Pond

Yesterday was rough for my Jack. He wanted to get a set of car and house keys for himself. Husband insisted on going. Jack came to me frustrated saying, "Mom, dad wants to go with me, but he acts awful in the store, I don't want to take him, Mom, please". I said, very softly, "Son, your dad doesn't know what he's doing anymore. It's not that he's being mean to you honey, it's the disease talking. The man we knew as your dad is gone, please, pretend he's your litle brother and let him tag along". That wonderful child of mine did as he was asked. I could see he was on the brink of tears, but took his dad with him. He said later he behaved very well in the store.

After they had gone, the ache I felt for Jack and husband overwhelmed me. It reminded me of a movie I had watched many years ago. It starred Henry Fonda, Jane Fonda and Katherine Hepburn. The husband was dying and took it out on his daughter, played by his real daughter Jane. And how Katherine Hepburn, her mother in the film, tried to get her to understand that her dad did not hate her, it was the disease. I remember watching it then and thinking it was all just acting and "made up".

Not so. That movie means something to me now. And now, so many years later that movie has come to play out in my life. It's not something made from Hollywood. The movie has true, deep meaning now, to me, to my family.

I don't know what the title of that movie has to do with the subject, but I am going to think that one day, too soon, husband will be at that "Golden Pond", with his mother. And after leaving this earth too soon, destroyed by a monster of all diseases, together they will understand. It all happens for a reason. It's not His will for husband to be here anymore.

Today, my child turns 17. I let him take the car to school, being his first day of school, his Senior Year. Last year. Next year this time, he will be in the Air Force. He will spend his 18th birthday away from me. He is a man now. Thinkng about that, I have to catch my breath.

God willing, he has dodged the bullet. The bullet that runs rampant in his dad's genes. The bullet that is killing his dad, right now, as we speak. His future looks promising. He deserves to live past age 47. He's my child.

Monday, August 15, 2011

Paranoia, Church and Business Cards

This disease has many stages. Most of them (who am I kidding? All of them), make me crazy. One however, can drive one up the wall and out the door. Paranoia.

Husband now thinks people are going to break into our home. Everything must be locked up, everything. He even puts a piece of a wooden rod on our bedroom window, to keep the "bad guys" out.

Now, we have a BIG dog, who stays outside when we go someplace. One look at that dog and no one would dare enter the yard. Husband will not be convinced. I have given up and just go along with it. But yet, it makes me crazy.

Another one is if something is making a noise, he thinks it's broken. Last night, the filter on our fish tank was making a slight noise. All it means is the water level is low, add some water. Husband wanted me to show him how to break down the filtering system in the morning so he could get to the bottom of the noise. I agreed, (it's just easier that way), added water this morning and it's fine. When he wakes up, there will be no noise, but he won't remember it making noise last night anyway.

We went to church yesterday instead of Saturday night. Great service, wonderful place. The sanctuary is huge, and I always find seats for us near the back, easier for husband to get out of at the end of service. I have him sit at the end, as he cannot walk in between rows easily. It was SRO and as we were singing, a lady came up to husband asking if the seats further down from us were saved. I happened to glance and saw her trying to get him to understand what she was saying. He had blanked out, "the look" was back and I just took over, moved down some, moved husband down some and everyone was happy.

During the service, I shed some tears. Husband just cannot communicate anymore. It's not that he cannot hear you. His brain doesn't recognize words anymore. I can communicate with him, but other people cannot. It's hard when people look at him like "what's wrong with you?" Not that that lady did, she was very nice. It's other times and that's what made me shed some tears yesterday.

At my Support Group, they gave me a great idea. Make up some business cards that say, "Thank you for understanding. Our loved one has Dementia". After yesterday, it's seems the right time to do it.

Marching into another week. What, oh what is in store for me?

Sunday, August 14, 2011

I have a job!!!

Yesterdy was interesting. It had nothing to do with Dementia. It had to do with me.

I had an experience this past week. I won't go into details, but, am so amazed at people.

I was treated with the utmost crude, rude, ignorant, thoughtless and humilated way, that just thinking about it now makes me so angry I want to strike back. But, I won't. I will let those people go on, chalk it up to one more chapter in my life. After all, I have better things to do and more important, God has given me a job to do. And, I didn't even have to submit a Resume nor go through an interview.

A job that does not require experience. It requires stamina. Stamina I thought I didn't have. A job that requires heartbreaking decisions. A job that will take me into the depths of hell. A job that will one day, leave me a Widow. A job that will some days, leave me exhausted. A job that will require me to be "on the clock" 24/7. A job that requires me to watch my husband turn into a helpless man. A job that involves travel. Into the Land of Dementia. Travel arrangements courtesy of God. No fees, no taxes, no charge for excess baggage.

And, I will accept the position. And for what? What will I accomplish in this job? What will I gain? What is the end result?

I won't question the why's. I was given this job for a reason. I will do it to the best of my ability. I know what the end result will be. I don't question that, I know.

Saturday, August 13, 2011

A new stage

Last night was rough. Husband was restless. I think the siezure phase of this disease has begun. Husband was jerking alot. I finally sat up and watched his body. The jerking would start at the feet and move towards the middle of his body. When I say jerking, I guess it was like a vibration, then the legs would jerk, tremble, then move up toward the stomach. And then he would choke.

All the while, I was planning on what to do. Do I call 911? What if he stops breathing? We have a DNR on file, so what good would calling 911 do? He doesn't want to be brought back.

So, on to another stage in the Land of Dementia. Oh well, I'm not the first person to go through this and sadly, won't be the last.

Now, I have to find my inner strength. God give me strength to get through this. Amen.

Wednesday, August 10, 2011

Traditions - Time will tell

So far this week, things have been OK. Husband has seemed more confused, but has accepted it. To me, it just doesn't feel like he is fighting it like he was. I don't know, could be my imagination, time will tell, I guess.

Our wonderful Dr at UNM personally called yesterday afternoon, just to see how we were doing. Dr Q left UNM in June to go to another medical associate. And, since we were denied for Medi-Caid, we could not follow him. He is such a neat Dr. He and I talked for about 30 minutes, talking about everything. I told him where husband was at now in this stage. He said he wasn't surprised at how things were progressing, said it would go faster now, now that the brain is dying. Funny how I can have this type of conversation with a Dr, about my husband, listening to him give me horrible statistics, nod my head and agree with him without crying. How is that possible?

Husband wants to talk about God and Heaven now. Whatever I am doing, I will sit down with him and open up the bible and try to find a passage. One that will make him feel better. Of course, I have to break down what it means to me, but make it in elementary form for husband to understand. Thinking about getting a Children's Bible. May be easier for him and me. He doesn't read anymore, can't, but at least I will be able to communicate through a more easier read. Anyone know of a good Children's Bible?

Summer is winding down. I'm happy. This heat has gotten to me. Fall is my favorite time of year, but with this Diagnosis last year, Fall seems kind of sad now. Just looking forward to crisp mornings, and the smell of Green Chille roasting in the market places. We have one nearby, and the smell is intoxicating.

We also go to Dixon's Apple Farm every fall. You pay a certin price, pick all the apples you want. These apples are organic and one of the best tasting apples. Also, they have this stand that you can buy all sorts of apple products. The best one by far is the apple fritter. They make them fresh to order. They are fresh from the fryer. Oh man, are those good. Only, this fall, we will not be going. After all the fires this summer, Dixon's Apple Farm burned down. All but a few trees survived. How sad for the owners, decendents of the original Mr Dixon, who started the farm from seeds.

Kind of like my "new" life now, heh? I now will make new traditions, traditions that won't involve husband. Jack will be entering the Air Force in June, 2012. No husband, no more kids at home. So, I have all year to find new traditions for me alone. What will I be like? What will I do? Time will tell, friends, time will tell.

Monday, August 8, 2011

Support Group

I attended my first meeting yesterday with this Support Group I joined. It was nice to get away and talk with other people who are experiencing the same as I am.

Some of the members have already lost their loved one, some are able to function somewhat, some are in Nursing Homes, some are being cared for by Caregivers and some, like me, care for their spouse themselves. As I sat there, I was thinking to the future and what it will be like with husband.

One of the members brought her son and daughter in law. The son said that he took his dad out to lunch last week, and as they sat down, his dad, who has some type of Dementia, said to his son, "So, tell me about your dad". How heartbreaking is that? The tears flowed at this meeting, but the love and compassion I felt there was overflowing. And the humor. How nice it was to wipe your tears, then laugh at the next person. You could really feel the love there.

Husband and I witnessed his Mother suffer from this horrific disease. It is not pretty. They literally loose their minds. Husband knows he gets to go through the same thing, which, in my opinion, makes it all that much harder.

Before I went to this meeting, I started reading the Bible to husband. He asked questions, at times there was that look in his eyes, hard to explain. Blank, but strange. At the meeting yesterday, this woman was showing a picture of her husband. Arlene leaned over to me and said, "See the eyes? Recognize it?" I looked at the picture and there it was. That same look. Unless you live it, you can't understand "that look". It's the mark of this horrid, horrid disease.

This morning, I will read more passages from the Bible to husband. He likes it, seems to relax, seems comforted by the Words.

Husband fell again. It's happening more and more now. This monster has taken over his body and destroys like no other.

On to a new week. A new week of discoveries for me, a new week of destruction for husband.

Sunday, August 7, 2011

Date Night?

Last night, Husband and I went out, together, jut the two of us.

To Church.

My heart was filled, husband's heart was filled.

It was a different kind of church. They had loud music playing, this band was incredible. The songs they sang brought tears to my eyes. I would glance at husband, and I could see a peaceful look on his face. The last song made me cry, it was so beautiful.

Pastor came on after 20 minutes of song. The way he delivered his sermon, I kind of looked around and thought, "Wow, he's talking directly to me". This man was fantastic. I would glance at husband, no blank stare, no shifting in his seat, no looking like he wanted to get out of there. It was incredible.

No ordinary church, but the people who came, came to hear the Word of God. I can't say enough. My heart has been filled with the love of God. He has directed me there. I can't wait to go back.

As we were leaving, I was helping husband walk out, there were alot of people, and they parted ways to let husband through the crowd. No look of pity for him, no look of disgust at the way he shuffles, just the look of a fellow Christian, coming to church, to hear the Word of God. I have tears as I type this.

After we got out of the auditorium, husband turned to me and said, "I liked that, can we come back?" Yes, my dear husband, we are coming back.

When we got home and he got settled on the bed, he said, "You know, I believe in God, He is real". Ugh, Don't want to cry.

God is speaking to husband now. God will be calling him Home, God is touching husband's heart now. It will be time, soon enough. Where we cannot reach husband anymore, God did. And my heart is full.

Saturday, August 6, 2011

Faith, Hope and Love

Funny how life experiences change you, or, in my thoughts, should change you.

I sometimes look at people and wonder what their life is like. Are they happy? When I worked, some of our clients were the most rudest people I had ever met. Before diagnosis, I resented these rude people. After diagnosis, I felt compassion for them.

What has happened in their lives to make them so bitter? It is really sad to think that they, like me, had a choice. They chose not to have hope and turned into mean, bitter people. When I think about it, it makes me sad for them.

There is hope for all of us going through these trials. We just have to have faith, see light at the end of the tunnel.

Husband has taken a nose dive. He had another fall. He talks in a mumbled, low tone. I can't hear him anymore. He is depressed alot. He forgets now where the bedroom is. The other morning he was shuffling in circles in the living room. I asked him what was wrong, he says, "Where's the bedroom?" Ever feel like you've been kicked in the gut? Yeah, it's that kind of feeling.

Dr A called me. He remembered husband. Wants to see him the end of this month. At the end of our conversation he said, "Mrs L, you do know that there is nothing we can do for him except to make him more comfortable?" Yes, I said. Got off the phone, husband asked who that was, I told him and his eyes lit up. He got excited that Dr A will now take over his care. "Oh good, when do I go? That's good news, isn't it?" "Yes", I say, then looked at him with his excited expression on his face, "Yes, it sure is honey". With that, he shuffles away and I cried.

Monday, August 1, 2011

Hope - Part 2

Starting this week, I will be learning coping skills, have support, someone to talk to, and, just knowing I am not alone. It has been a long time. I now have something to look forward to. I now know there will be a life after husband is gone. For me, for Jack. I am hoping that by joining this Support Group, I can meet more and more people going through what I am going through. And maybe, just maybe, there will be someone I can help.

This journey is hard. But, God knows I can do it. This lady that heads up this group said to me, "You may feel like you are loosing your mind, but you are not, your husband is". It just made sense to me. She has given me helpful pointers over the phone. I applied them this weekend, and, it was a very pleasant weekend.

I also talked to her about how he seems fine for a few days to a week, but, then it all comes crashing down, and he's worse than before. Finally, finally, I found someone who went through the same thing. I told her I called it the Honeymoon period. How as time went on, I found myself dreading these Honeymoon periods, cause I knew what would happen next. She felt the same way with her husband. It's just nice to be able to talk your heart out and have someone at the other end of the line say, "Oh yes, I went through the same thing as you did, I also felt the same way you did".

Know how there's a big storm? Thunder & lightening? Wind? But, when the storm is over, the smell of fresh air, everything looks so clean?

I feel that way today. There will be more storms to come. This is just the beginning of the nightmare. But, I now have people who have been through it, or are going through it. I can now lean on someone besides myself.

I can do this, I say to myself, I can do this.