Husband's last camping trip

Husband's last camping trip

Tuesday, January 31, 2012

A little this, a little that

Another one of those low key days. Husband continues to be out of sorts. Tries to talk, stops mid sentence, mumbles something, then will shuffle away. Asks the same questions all day long. He also seems sad. I've gotten him to laugh a few times, but, for the most part, just not the same anymore. Still wondering if it's the meds or the monster. Have to call the Dr in 2 weeks, will discuss then. Until that time, I continue to deal with what is at hand.

Sunday night was rough for husband. His whole body had tremors. Lasted much longer than the usual jerks. No choking, just the whole body would tremor, lasting for about 20 seconds each time. I sat up in bed, timing them. There would be about 40 seconds in between, then another would hit. This went on for about 1 1/2 hours. Either they stopped, or, I fell asleep. He was shaky yesterday. I don't know what this new development is. Take one day at a time, see how things go today, may have to call the Dr sooner?

Had to take Jack to Urgent Care yesterday. Thought he had Strep Throat. Luckily, it was negative, but he did have an infection. He is now on meds. Dr says no school until tomorrow. After taking his meds, he seemed to bounce back by last night. Keep him down today.

On the job hunt report, I got a reply to one company I had applied to. They were reviewing my Resume and would contact me within 2 weeks. And no, it wasn't for the Car Salesperson or the Delivery Driver or even for that fact, the office person needed to answer the phones. Actually, it was a Real Estate Company that needed a Leasing Representative. I have never done Real Estate, but the position did not call for experience. They were wanting someone with a background of working in the professional field and had some accounting, preferably, banking. I fit the bill. Whatever. At least I got a response from someone, anyone.

Not much else going on here. Rather boring. Aside from the trip I took to Urgent Care yesterday. Still waiting for my Letters of Recommendation from previous companies I worked for. Both sent me emails stating they would have them out to me by end of this week.

During one of husband's clear moments yesterday, I asked him if he was upset I was looking for a job. He looked at me and said, "I thought you already got a job?"

Yep, it's like that around here. Are we having fun yet? I looked at Jack when husband said that, and him being sick, just looked at me and we both started laughing. Not at husband, no, never, but, at our life now. Husband looked at us, smiling, then said, "What?"

Before this monster came into our lives, I never thought it possible to laugh in the face of such a grave matter. Laughing, I am learning, really does help. It's really good for the soul.

I shall laugh again today.

Monday, January 30, 2012

Job Qualifications

One of the many reasons I started this blog was to document this journey. I may want to visit this again in 5 years, see where I've been and where I'm going. I want to go everywhere with this blog. I want to share my life, there are many stories to tell. I want to let people see my sense of humor and quirky ways. I am always looking for something to laugh about. It helps me get through the day. Take for instance, yesterday.

While going through the Classified Adds in the newspaper online, I noticed the details on job descriptions that made me stop and think. On one job description, they wanted someone to answer multi-line phones, file and sort mail. Qualifications? Associate or Bachelor Degree in Administration and 5+ years experience. Pay rate? $9.21 per hour. I don't have a Degree in anything they would be interested in. It's called a Degree from the School of Hard Knocks. So what did I do? I applied.

Another one wanted someone who had a Bachelors Degree in Administration as well. It was a uniform company, driving a delivery truck and delivering uniforms to various companies throughout the city. Qualifications? As mentioned before, Bachelors Degree is Administration, experience in driving, (are you kidding me?) and delivery. At the end of this description, they stated, "Experienced Need Only to Apply". So.......I figured, I have experience in driving and I have delivered 7 children, yep, you guessed it, I applied. Pay rate? Depending on experience. With my driving experience and delivery experience, I should be at the top of the scale for that one.

I was in the section for Office Administration / Bookkeeper / Accounting. In this section there were two adds for New and Used Car Salespersons. Both adds said they were looking for energetic, outgoing, friendly persons who were looking to earn top dollars. I can be energetic when prompted, am outgoing and friendly and I am looking to earn top dollars, so, I applied. Hey, it was after all, in the Admin / Bookkeeping / Accounting column.

One of the places I went to last week stated in their add that "Professionals Need Only Apply". I put on my Sunday Best, dressed professional to the nines. When I walked in, they were all so friendly.... and guess what? They were all dressed in Jeans and T-shirts, nice T-shirts, mind you, but T-shirts. And there I stood in my Sunday Best standing out like I was the Professional Police. They did not call me for a 2nd interview.

So, I have decided what I want to do now that I'm all grown up and stuff. I think I shall go down to the newspaper office and advise them they need me. They need me to advise clients on how to place their adds, what to say, what not to say, ask how they dress in the office, be more specific in their job descriptions, like, delivery in babies or what? Also advise them that anyone who has a degree would probably not accept a position for $9.21 per hour, unless, like me, were desperate.

After applying for these jobs, to which I am not qualified, I closed my Laptop and started laughing. I said out loud, to, no one, "This is insane. This is crazy", all the while, still laughing. And then, IT happened.

I answered myself!!!! "Yes it is."

Sunday, January 29, 2012

Is this for real?

Very low key Saturday. Husband seems a little out of sorts. Once again, probably, (hopefully) it's just the increase in meds.

Went into deep thoughts yesterday. Did a "natural study" of myself. Thought about my past, present and future. Took stock of what I have, what I want and what I need.

I do not like my life right now. I am uncomfortable living this life. It's not natural. I often wonder what others would do in my situation. Would they fold like a card? I've changed in the last 2 years. I used to always look to the future with a child's eye. Planned for when there were no more kids at home (gulp) and it was just husband and I. The future would be different without any kids, but, how exciting for us both.

Somewhere, somehow, we took a wrong turn and landed in the Land of Dementia.

My idea of where I wanted to be at this stage in my life would be preparing my youngest for Graduation, going into the Air Force. We would plan a big party for him, so excited for this child of mine, with his future so bright. Reality says otherwise. While I am excited for this child and happy for him, it's not what I wanted. He told me last night, "I used to look forward to weekends, Mom, no school, now, I look forward to school."

This child of mine took a wrong turn too. He now has a cloud over his head. Will he also suffer from this horrible monster? Will he live a long life? Or, while forming in my womb, did he too get the defective gene?

I need to There are days I do not want to talk to anyone, even husband. I want to be left alone in my thoughts. Then, there are days I need to talk with someone, anyone. What I need is a normal life. I need to trust more in God. I need to have a stronger relationship with Him. I need to lean on the One who is far greater than anything else. God.

But, once again, I too took a wrong turn. I somehow landed a part in a movie where everything is make believe. Only, it's not make believe, it's real and it's happening.

How could I get a part in a movie when I don't remember auditioning for it?

Saturday, January 28, 2012

Friendships & Family?

Husband has had 3 nights of good sleep with no jerking and choking. The increased dosage in his night time meds are doing the job. The increased dosage in his daytime meds are helping as well. However, the day time meds do leave him somewhat in a stupor, but, Dr A said it will take time for his body to adjust to the increased dosage. Husband has seemed more relaxed, less agitation, but, I noticed yesterday, memory issues are ever present. He could not hold a conversation, forgot what I had said many times throughout the day. Could be the meds, could be this monster has taken over. Combination of both? Who knows? I've said it before; you can go anywhere with this disease. Anywhere.

Thank you for the uplifting comments on my frustration in finding a job. It is frustrating, but, I try not to let it spill on these pages. I did yesterday and I apologize.

My days are filled with being the "strong" one. My days are filled with "do this, do that". My days are filled with reassuring those involved that "I'm fine". I put on that Academy Award Winning Smile and play pretend. I have to. If I don't, husband would not know what to do.

On a positive note, I had emailed my former boss and asked her if she could compose a letter of recommendation for me. Did not hear back all week from her, but got a reply yesterday. She was sorry she had not gotten back to me, kids being sick, the business, life got in her way. Said she would be happy to do a letter for me. Was very sorry to hear that things have gotten bad with husband. Said we needed to do lunch and would talk. She is so sweet. We have kept in contact since I left my position, and, it's nice we can still be friends.

I told her in my email that I think I may have jumped the gun in quitting so soon. With her though, she is the kind of person that would say, "Well, how could you know?" So, good news there. Am looking forward to having lunch with her soon. She is a really great lady and we had (and still do) such a connection when I worked there.

Today is house cleaning day. Need to start packing some stuff. I'd like to have a lot of it out of the way just in case I do get a job. Husband can't help in the move, so, it should be interesting. I'll get a U-Haul and move in one big trip. So much easier that way. Hopefully, I can find a good deal on the moving truck.

My friend, the one I spoke about that was so upset with me because I could not pick up a prescription for her last week called the other day. I did not pick up so she left a voice message. She did not come right out and apologize, but, said we had been friends for a long time and she cherished our friendship. Said she did not want to end our friendship. I don't know. I cannot be at her beck and call when she needs something, but, can I honestly turn my back on her? I certainly wouldn't want it done to me. I have not gotten back to her, need to think about this.

This past week I found out that a family member by marriage made a comment to someone that they were sick and tired of hearing about my struggles with husband and finances. My struggles are my struggles, I don't visit that on anyone. But, when you are dealing with the knowledge that my husband can not be cured, he is going to die, leaving behind a family, let's just say it's no walk in the park. I don't walk around saying, "Woe is me". I do what I have to do. You know, people are so insensitive to others. I don't think I could ever be that way. It takes all kinds to make this world go 'round, but, how insensitive is that?

Be careful what you say, be careful what you do. Because, it could happen to you. (Hey, that rhymes) And that, my friends, would NOT be a good thing. Take time to be more aware of other people, their feelings, their struggles. Hey, anyone wanna trade lives?

Naw, didn't think so.

Friday, January 27, 2012

Double Edged Sword

Not much going on yesterday. We spent a low key day. I finished up laundry, checked online for any job postings and observed husband.

Since I had to up his daytime meds, I wanted to see if it had any effect on him. It sure did. His body may have to adjust to the strength I am now giving him. After his breakfast, I gave him the new strength, then went about laundry, dishes, the usual.

After about 1 1/2 hours, I went into check on him. He was awake, but seemed in a stupor. I asked him if he was ok, he said yes, very relaxed. Well, that's the idea. He wanted a coke, so, I ran to 7-11 to get him one. He used to go there a lot and is well known and liked there. One lady, Ruth, always asks about him. She always says, "how is HE doing today?" She is a sweetie. I told her all about our visit with Dr A, she shook her head and her eyes watered up. As I left, she said, very softly, "you tell him I'm thinking of him". I told him and he seemed to like that.

As far as any job offers or interviews for that matter, nothing. I mean, nothing. I am beginning to wonder just what all of this means. With my qualifications (not bragging, just sayin') I should have had several responses by now. The phone remains silent, the emails are not pouring in.

Does God want me to be home? Is it His will that I NOT work outside the home? And, if so, how can I make it financially? I am confused. I have felt so strongly the prayers coming my way, felt so reassured that a job opportunity would come my way. Once again, the phone remains silent, the emails are not pouring in.

I will do what God wants me to do. If it means I have to struggle financially, then, so be it. I won't like it, but, this will be His will. Maybe I'm supposed to be here, at home, for husband?

The idea of working outside the home is OK for me. Granted, I do like being home, but don't like the idea of this constant financial struggle. I also like the "working outside the home routine" as well. Paychecks are nice as well.

I'm confused and discouraged today. Do I question God, asking him "Why, Lord, I need more financial stability, why?" Or, do I relax, let things happen and roll with the punches?

Either way, it's easier said than done. I need some reassurance that I can obtain a position, somewhere, somehow. Could it be that the "right" job has not been found yet? One can drive oneself crazy thinking of all the what if's and why's. And, I'm doing a good job of that, for sure.

Thursday, January 26, 2012

A day in my life

What a day yesterday. Husband had PT, then we were off to see Dr A. Now, Dr A is the top Neurologist in the state. It takes minimum 6 months to see him, if you're lucky. I am so glad we have him. Especially after yesterday.

When we got into an exam room, Dr came in and started to examine husband. He told me his legs are beginning to atrophy, that PT is fine, but, it won't stop the legs from becoming useless. He said keep taking him there, if not for anything else but it gets husband out of the house. He examined his arms and said he sees some signs of the arms being affected. Nothing like his legs, but, it's starting.

He then gave him the usual tests. Like drawing a clock, (he couldn't), subtracting 7 from 100, (he couldn't), did not know what day it was, got the month wrong and so on. Then, he gave him a written test, and asked me to step out with him. We went to his office where I told him he was still insisting on driving. Dr was flabbergasted. He said he would send in a request to Motor Vehicles to have his license revoked. (Thank you) We also talked about the prognosis, which of course I already know, but, I wanted to see what stage we are in. He said from a scale from 1 to 7, with 1 being slight, to 7 being end of life, he is at 5. OK, be careful what you ask for.

Once we got back to the room, Dr A told him he is not to drive anymore, at all. He told him that, legally he has to report to Motor Vehicles. Make a long story short, husband was furious.

We then went on to the subject of Genetic Testing. We started this almost 2 years ago, but, our insurance denied it because of the cost, ($1,800 and up). Just as we were talking about putting in a request, his nurse came in and said she had gotten approval through Medicare. Talk about an answered prayer.

He had his blood drawn and we now begin the wait. 6-8 weeks. This Genetic Testing is important for a few reasons. What kind of defective gene has been passed on to him? Because this type of disease takes them so young, they need to identify it. Because I do not want him to have an autopsy, the results of the genetic test is the other choice. Lastly, but most important, has he passed this defective gene on to Jack?

I told Jack about it last night. Gave him an option on what he wants to do about it. Do you want to know if you have the same defective gene? His answer:

"Mom, if I found out I had it, I would end my life. I want to live a happy life, if I get it, I get it. But, I don't want to know ahead of time. End of discussion".

His choice, his life.

Husband was quite upset when we left. Later on, at home, I spoke with him about driving. He opened up to me, and we made a deal. He would refrain from driving for 1 month. I'll take that. Then, I eased onto the subject of selling the truck. Told him Tyler wants to buy it, and that if he did,I would let him have some of the cash to put in his pocket. Wouldn't that be nice for you to carry cash again?, I asked. He seemed to like that idea. The rest of the money would be used to move on. He seemed receptive. It was a great conversation. I told him how much I worry when he drives. He seemed sad that he worries me. It just ended well.

Dr A upped his meds at night, upped his meds for during the day and added another med during the day for the spasticity in the legs. He slept good last night with the increased dosage.

I know we are on the right road. From his not driving anymore, selling the truck, genetic testing finally underway (2 years in the making) to a good nights sleep, I feel more relaxed than I have in a very. long. time.

God is Good.

Wednesday, January 25, 2012

Doctors, Doctors and more Doctors

No news on the job hunt. I was almost positive I would get some calls yesterday. Oh well, have to keep applying, eventually, one will come through. It takes time, I know, am trying to stay positive.

Went to my Dr yesterday for a check up. Blood pressure was in the normal range, (a first for me), but my pulse was high. Go figure. I talked with my Dr about the possibility of going on some anti depressants. He did not feel comfortable in giving me any kind of drug for what I am going through. He said that the side affects could be worse than the actual stress I am under. Just sitting there talking with him made me feel better. This appointment was all about me, and me only. He knows about husband, he is his primary Dr as well. He examined him in 2009 and knew something was wrong, he actually thought he had a brain tumor.

I had to keep reminding myself this was MY appointment, not husbands'. It was about me and how I am handling all of this. He reminded me I needed to take care of me first, otherwise, I will be no good to husband or anyone else for that matter. Said he could see I was stressed, "Under severe stress", were his actual words. But, offered me other avenues to take versus any anti depressant. I will take his advice. I also told him about the heaviness I have in my head. He smiled and said, "I am not surprised."

He got very serious and told me that what I am dealing with is one of the most devastating diseases and takes a toll on the family. He advised me to look into Respite Care, available through Social Security. Said I could come in anytime if I needed him, just to talk or cry. Said he is available to me 24/7, even if it was after hours, just call his service and he would call me back.

All in all, I felt better when I left. I love my Dr and know he has my best interest at heart.

On the Dementia side, confusion has been the only word I can say. Husband has been locked in his own world for awhile now. But, even with his confusion, he told me he watched the State of the Union Address last night on TV. Said it was very interesting. Now, this man cannot even understand how to operate his remote control anymore, cannot tell his left foot from his right, cannot answer the phone anymore, but, he watches the State of the Union Address? I don't know folks, you got me.

We go see Dr A today. I hope he got my email. I told my Dr yesterday what I had done, he said if needed, he would put in a request to the state of NM and have his license revoked. I hope his appointment goes well. This man surprises me, he may be just fine, mind wise, when we see his Neurologist today. You just never know with this disease.

So, here we go, off to another Dr appointment. I'll get to hear all about what stage we are in in this process, I'll once again be informed on who to call in case of emergency, what to do in case a major seizure happens, how to prepare myself for the worst, and, the final one, always, "Mrs Lucero, there is no good outcome".

Yeah, I get that.

Tuesday, January 24, 2012

New House? Check - New Job?

I envy people who go to bed, snuggle down on a cold, rainy night and go to sleep. Wake up refreshed, ready to start another day. My nights are not that way anymore.

Husband was restless last night. I woke up to find him wandering the bedroom, the bathroom. I finally spoke to him when he was hunched over near the clothes hamper. Told him to come back to bed. He mumbled something, but came back to bed.

Before I had fallen asleep earlier, husband had a few jerks, choked, then a big jerk. I laid there, waiting for him to breathe again. Once I heard him breathe, I fell asleep. Only to find him wandering a few hours later.

I noticed when I got up this morning that I have a heaviness in my head. Then, it dawned on me. I feel it all the time. Tried to remember when I didn't have this heaviness. Couldn't. Remember the days of getting up with a newborn? That sleep deprivation we have all felt? Yeah, it's like that.

Husband was very confused yesterday. When I was gone, we got the call that we had gotten the house I had been wanting. Unfortunately, they gave husband all the information. So, I had to call and leave a message for them to please call me with all the details. I had told him not to answer to phone, as he does not know what to do when someone calls, but, this time, he did. Later, last night, he started telling me about the details again, only this time it was totally different from earlier. So, now I'm wondering, did we get the house or not? Still waiting for them to call me back.

Going out into the working world felt good yesterday. As mentioned yesterday, I had to apply in person to two different companies. I felt comfortable at both locations. Imagining working there, filling out the applications. I did get one "on the spot" interview, told me they would be calling me for a 2nd interview. Will see. At the second place, the man I spoke with wanted me to be seen by the Office Manager, but, she was tied up, said they would call me.

I also got a few responses via email and phone from my Resume I had sent in online. One was, I had to fill out a questionaire, send it back to he HR department. That one sounds great, however, it's only part time, 21 hours per week. Well, that's 21 hours more than what I'm doing now.

The first place I went to, when I got the "on spot" interview, asked me why I have been out of work for so long. Here it comes, I thought. When I told her about husband, she didn't blink an eye, said she was impressed with my Resume. Could be a good thing, or a bad thing. Time will tell.

I feel peace about going back to work. I can really feel the power of the prayers. I know, deep down inside of me that there is a job for me. God's in control, let Him do His job.

So, my first day of easing into the working world was for me, a success. I sailed through the questions, felt at ease talking with potential employers and know that I did all I could.

Today is a new day. Only God knows what today will bring. My two prayer requests have been that #1 I find a house for us and #2 I get a job. Ok, got the house, One down, one to go.

Monday, January 23, 2012

Back in the saddle again

I was hurt yesterday by a "friend" I thought was my friend. Long story short, I couldn't pick up a prescription for her yesterday, offered to do it today, she became furious and hung up on me. I might add that this medicine is to be taken once a week, she won't need it until next Saturday, but demanded I get it for her yesterday. End result left me stunned. Oh well, life goes on, heh?

Today I hit the streets running. There are several places I need to apply at that make you come in and fill out the application and submit your Resume. I like that, kind of check out the place, see if it's a good fit for me as well. I applied to about 15 different companies yesterday online. See if the phone starts ringing.

I do want to mention the sweet comments I have been getting. Thank you all. It's nice to know that a complete stranger is praying for you. I usually don't publish the comments, but have decided to start. I have been feeling the prayers. I have this peace about looking for work. It's like God Himself is telling me I will find a job. I need to reassure myself today that God is working.

I got up early, showered, picked out my clothes last night and am ready to join the working class once again. I feel like a kid starting school. I'm excited about the prospect of working again, being back in the "world", but, at the same time, I'm nervous.

I worry about husband as well. Will he be alright? Will he eat? Care for himself? If he is at Adult Day Care or his dad's house, he'll be fine.

He told me last night that he could be home alone, he'd be fine. I had to sit down and explain to him that I would feel better if he was with someone. He looked so sad. But, I told him, I would fix him special lunches and call him throughout the day. He seemed to like that idea.

I'm more nervous about having to explain where I've been for the last 16 months. In my cover letter, I said that husband became disabled and I chose to leave my position to be home with him. I also said that I was happy to report that I was now able to seek employment once again. Trouble is, if they ask me what his disability is and I tell them he is terminally ill, they may not want to hire me, thinking I'll call in a lot.

On the other hand, I don't want to lie to them. Peculiar situation I'm in, folks. Guess I'll just play it by ear.

So, here I go, watch out world!!!!

Sunday, January 22, 2012

Little miracles

On Friday nights, we go to a Bible Study. It's a great group of couples. At the end of our study, we write our name, number and prayer request on index cards, then pick from the basket. Each day, you are supposed to pray for that person and their prayer request. At the end of the week, you call that person to let them know you have been praying for them. It's a great way of holding someone else up in prayer.

This last Friday night, as I was doing mine, husband was holding his blank card in his hand. He cannot write anymore, so I do it for him. He tells me what to write. Sometimes it doesn't make sense, but, I don't want to put my own words on the card, so, I talk to him and finally he decides what his prayer request is. Of course, if I wrote on his card, using my own words, it would read something like this - "Please pray that I will be able to sell my truck, as I can no longer drive". Yep, that's what I would put on his card. Of course, I don't, it has to come from his heart.

When I finished mine, I took his blank card and said, "OK, what is your prayer request?" He looked blank for a minute, then said, "Pray for me as I am dealing with my "condition" and, be more understanding and grateful to my wife". Whoa. Caught me by surprise. My friend Jackie was sitting nearby and heard what he had said. I looked up at her and she just smiled. Never thought I'd hear that from husband.

Husband is coming around to accepting his disease. Don't get me wrong, he still fights it, but, saying it out loud from him was a big step. Little miracles, but, I'll take it.

Last night at church as we were singing, I just started to cry. I couldn't finish singing. I stood there and let the tears flow. Husband did something he has not done in 2 years. He took my hand in his and held it, ever so lightly. I looked up at him, he too had tears.

It was a moment, fleeting yes, but a moment. God is showing me He does love me and is there. God is showing me that husband is communicating with me, he's not gone all together. Somewhere, deep inside husband's brain, he's still there. God showed me that by a simple gesture.

My husband held my hand last night. Praise be to God.

Saturday, January 21, 2012

One day........................................................

When I come here each morning, it's after I have read other blogs, checking in on their lives. They are so interesting, full of "chatter", busy, daily lives. They all are so.......well, normal.

Last night, as I was falling asleep, I was imagining what life could be like for me, for us. Being that it was Friday night, I was thinking we would be going to bed early, tired from the work week. I would be getting up early the next morning, going grocery shopping, come home, clean house and start the laundry. Back in the "normal" days, before diagnosis, we would usually get take out or, go out to eat on Saturday nights after church. Sunday, I would cook a big dinner, finish up any laundry, watch an old movie on TCM or AMC, getting ready for the work week.

The house would be sparkling clean, laundry freshly folded and put away. We would go to bed early. Monday morning, the alarm would jar us awake, and the week would begin.

Oh, how I miss that. I don't dwell on the past, but, I keep thinking that if only I had a job to go to, then I could establish a more "normal" routine for me.

My husband is going to die, I get that. But, I have to have a life after. If I had a job, then maybe, just maybe, I could begin a new life, something I've not had before.

If I did have a job, husband could not be left alone. His dad said he could stay with him during the day. That would be good for husband.

I don't know why I'm so focused on this job thing. It could be because I want some sense of normalcy in my life. My whole being craves it.

So, there you have it. My blog may seem boring, depressing and "same thing, different day" to some. But, it's all I have to offer, for now. I am praying one day, soon, I can post an uplifting post about how I got a job and things are going well.

I apologize for this blog not being one of those happy, full of life blogs. I hope one day to have my blog turn into something other than this, something you, as readers and followers will look forward to my posts as I do others. My hope is that it will be a comfort to you, a chuckle for you, an uplifting, inspirational and entertaining blog. Until that time, please bear with me as I travel this journey I did not ask for, but, am trying to travel with faith, dignity, strength and courage.

One day,I hope all of you will say, "Oh, gotta read 4th Pew on the Left", I just love her posts".

Friday, January 20, 2012

A Normal Life

No word as yet from Dr A. Being that he is one of the top Neurologists in the city and state, I am not surprised. I just hope that he reads the email I sent before our Wednesday appointment.

Husband has an appointment on the 2nd of February for his annual eye exam. When I made the appointment in December, we discussed it and how Medicare/Humana would now cover 100%, except for any frames he would want. I told him we could keep his existing frames, but of course replace the lens if he so needed. He was fine with that.

Yesterday, in the mail, I got the forms to fill out for his appt. They send in the mail to avoid waiting time when you arrive. Husband was completely confused about this appointment. Asked me when I had made the appointment without telling him. What? I reminded him about our conversation back in December. He had no recollection of any of it.

Why oh why do I discuss something with him I know he does not understand anymore? Why do I put him and me through this? Haven't I learned by now?

I guess it's because I'm still holding onto my "old life", the "normal" life I had once had. I have not adjusted to this "new normal" I think. I want my old life back. I don't like this way of living. It's not fun, it's not "normal", it's heartbreaking, stressful and complicated.

Onto another subject:

No news on the job hunt. I did get a response from one company I had applied to. They said that I was not chosen to interview with them. At least I got a reply. Rejection is hard on me. But, there is a job out there for me, just waiting for "it" to happen.

House hunting is still in effect. Have a lead on one house. They owner is supposed to call me today. The rent is the same, but, don't have to pay water/garbage and sewage, so I'll save money. Plus, it has a fireplace, is smaller, so I will save on utilities. The HOA's take care of all gardening in the front, so all I would have to worry about would be the small backyard. It's in a very quiet location, not too far from here. I sure hope we get it, I love the area and am looking forward to saving money. Now, if only a job would come through, I'll be set.

The weekend is around the corner. We have our Group Meeting tonight, with church tomorrow. I look forward to both. I need it.

This is where I am at today. Husband has woken up early, making my day start earlier. I want to have a good day. No confusion today, please. No agitation today, please. Can't I have just one "normal" day?

Thursday, January 19, 2012

Anywhere but here, Lord

Before I took husband to Physical Therapy yesterday, I decided to drop him off and head over to Dr A's office. I wanted to speak with Dr A in regards to husband's condition. I also wanted to speak to him about husband's insistence that he can still drive, thinks he is fine, and will not listen to me.

The front desk women were very nice as I explained my situation. I waited for about 45 minutes, but, the Dr was just too busy. I didn't get my chance to speak with him privately. It was such a good idea too.

My next best idea is to email him. I have his email address, and, as busy as he is, I am hoping he will read my email before next Wednesday's appointment.

When I take him to the Dr's, the Dr will ask how is he doing, what is he doing and how is his walking. I answer, but husband interrupts, says he is fine, nothing is going on. It's frustrating because husband thinks he can fool the Dr. When we leave, husband is upset, blaming me for everything, says I exaggerate when I talk with the Dr, and on and on.

My request to Dr A is that he put in a request to suspend husband's Drivers License. That way, husband cannot drive, and, I can sell the truck. Both of my biggest issues to date will be taken care of. (A special pat on the back for me, thank you). Now, let's see if I can make it happen.

Living with someone afflicted with any kind of brain malfunction is hard, really hard. It wears you down to a frazzle. Couple that with husband's outright denial and refusal to face the facts, well, it makes me question how can I get through this. All day, everyday is a real struggle for me as well. When I go to him to help him, he pushes me away. When I don't offer to help, he says why didn't I offer to help? At the end of the day, I am worn out, not from just physical activity, it's the mental tear down I experience daily.

As he "walks" through the house, he holds onto everything, otherwise, he will fall flat on his face. When I mention using the walker in the house, he says he's fine, just a little stiff and sore, does not need a walker to aid in his walking. And so it goes.

Going back to work would be a relief to me. I could get away from all of this, escape. But, on the flip side, I feel guilty for feeling this way. I am constantly thinking of ways to help him, and, constantly thinking of ways to escape him.

I don't remember signing up for this. Someone must've volunteered me, thinking I could do this. Well, today is one of those days when I don't think I can.

Wednesday, January 18, 2012

Here it comes, ready or not

Husband continues to be in a constant state of confusion. Each day is more confusing than the day before. I don't know when this all started, but, I noticed it last weekend, gradually, but, now, it's hard not to notice.

Take for instance yesterday. We were getting ready to leave the house. Husband was putting on his shoes/braces. I went to see what was taking so long. Jack was in the room with him. He was telling husband what shoe/brace went on what foot. Husband got confused, Jack got inpatient and I stood there not believing what I was seeing.

As I entered the room, husband looked up at Jack and said, "I don't know how to do this. I don't remember what right foot and left foot are anymore. You have to help me". As he said this, Jack turned around to face me and mouthed the word, "HELP". I tried to calm husband down and we finally got his shoes/braces on.

It's these little things I am not prepared for. I am waiting for the big seizure, the big fall, the big choking. Not this. Not the "I can't tell my left foot from my right foot anymore".

You also have no warning this is about to happen. When it does, it knocks the wind out of me. For the rest of the day/night, that's all I thought about. How pitiful my husband has become. How awful it must be for him, to live in a constant state of confusion.

I took him grocery shopping with me yesterday. He pushed one basket, I pushed the other. Not because I fill both baskets up, but, he needs to hold onto a basket to keep from falling. (Yes, he needs the walker, I know, I know). As I was putting stuff in my basket, I looked at husband's basket. In his basket was one bag of those dehydrated beans (they are delicious). I looked at him, he stood there with a funny smile on his face, like he was just got caught sneaking stuff into the basket. I just laughed, told him he was being sneaky.

On our way home, it was quiet in the car. I glanced at husband. He slumps in the seat now. He was looking out the window. Stopped at a red light. I took a good look at husband's face. And eyes. He was moving his head, as if he was looking around his surroundings, but, the whole face had a blank stare about him.

He's gone now. It's been too long. He is really gone. I can't reach him anymore. No one can. It's now just a matter of time. I will care for him, love him, feed him, make sure he is comfortable.

After everyone had gone to bed last night, I realized something. This is the beginning of the end.

Tuesday, January 17, 2012


I woke in the middle of the night as husband was telling me to go get Bessie,(our big dog), from the back yard as she was eating chicken bones. Only, he didn't say it as clear as I just typed it. It sounded like he was drunk, slurring his words. I don't know if he was talking and acting out in his sleep or, if it was hallucinations. Hard to tell.

I dozed back off, then woke again to see him hobbling into the bathroom, muttering to himself.

Before diagnosis, I welcomed sleep. I would get into bed, snuggle down for a good nights' sleep. I now go to bed, lay there for awhile, waiting for the tremors to stop, doze off, wake up, check on husband, doze back off, wake up, check on husband, all night long.

Confusion abounds here lately. This has gone on for days. He just doesn't seem to be with it.

I have started up my job search again. Trouble is, there are so many unemployed people out there, the competition is great. If I don't find a job, then so be it. If I do, great. The extra income is needed here. I have no other choice. If I do happen to find a job, husband will go to Adult Day Care. Husband can also go to his dad's house during the day. He will probably choose his dad's house. Either way, I have to go back to work and husband will need supervision. Period. End of discussion.

I have to run errands today. That means I will leave husband at home. Alone. He cannot go to too many places, he tires easily, gets confused, starts to wander off and gets lost. I call, hoping he will answer the phone. He gets confused when the phone rings nowadays. Sometimes he answers, sometimes he doesn't. So, I will run my errands as fast as I can, all the while with husband on my mind. I hope he will just stay on the bed watching TV.

So, this is where I am at today. The decision to return to work has been hard on me. Can I perform on the job, knowing I've left husband in the care of someone else? Will I worry all day about husband? Is he OK, has he eaten? Can I do this? Will I find a job?

So many questions, so few answers.

Sunday, January 15, 2012

How I am getting my groove back!!

OK, garage sale is officially closed. Can check that one off my list. Glad it's over. Done, stuff gone.

Now, today, I am starting a new chapter. Today is the day I will begin to find me. I don't know who I am anymore, or where I am going. I have lost me. I also don't know where all this came from. It may be because so many memories were stirred up during our garage sale.

Going forward now, I am going to concentrate more on me. I feel at times like I could lose it at any moment. I hold things in, I am angry. I have to work on that. I am starting counseling this week. I need it.

Husband will be my #1 priority, always, but, I need to concentrate on me too. Like I say, I have lost me over the course of the last 2 years. I have to get me back.

We went to Pat & Christine's for dinner last night. Husband looked tired and drawn. He ate a good dinner and we came home shortly after.

I have to take the cane away, replacing it with the walker, just don't know how. It would make his walking so much easier. He is beginning to misplace the cane on a daily basis. I have to stop what I am doing and go find the walker. Sometimes I find it outside, leaning against a bush, the truck, garage door or laying on the ground. Sometimes it's in the bathroom. He gets agitated when this happens. The walker is the next best thing for him. Now all I have to do is convince him of that. At least it'll be easy to spot if he loses it!!

I cannot wait to see Dr A. Maybe he can convince him of using the walker. He just will not listen to me. Fights me on everything. I know it's the disease fighting me, but, it's still hard on me nevertheless. Also, the tremors are non stop now. I believe there is something stronger he can take to ward the tremors off. I have read though, that any drug will only stop the tremors to a certain point. After awhile, it won't do any good. I don't know if we're at that point or not. Dr A will be able to tell me.

So, here I am today. Facing two hurdles. Finding me and graduating to a walker for husband. I think I can find me again. Husband using a walker? Stay tuned.

Saturday, January 14, 2012


What a week. A week filled with emotions, observations and memories.

I could not imagine that having a moving sale would trigger all these feelings. The things I have gotten rid of were just things, However, I did not realize that they would bring out feelings I did not know existed.

I sold a lot of stuff. Making this move easy for me. I was teasing the kids yesterday. I told them they had better watch out because one morning I may wake them up and say, "Get up, I just sold your bed". I have been focused on getting rid of so much. Purging.

Could it be that I am trying to rid myself of holding on? Am I trying to wash away the memories of days gone by? I don't know, but, maybe, deep down, I am trying to get rid of all that was and never can be again.

On the observation side, I've noticed a decrease in husband's memory. It happened so fast this week. He is fading away, I can see it. He cannot pronounce even the easiest of words now. When did that happen? Jack came to me yesterday and said, "Mom, dad's getting bad. I had to help him turn on his TV. He forgot how." Crap.

His attempt at walking has gotten more labored. He holds on to everything in an attempt to walk. I noticed yesterday while in the garage, his legs were having constant tremors. While dishing up dinner last night, constant tremors. When I noticed it, I looked up at him, saw the fear in his eyes, then, he grabbed onto his legs in an effort to stop them from the tremors.

I will have to take the cane away and he will have to start using the walker. Getting him to do this is another thing. Eventually, I will have to get a wheel chair for him. I wish I could afford a mobile one, one that they drive themselves. It might be easier for him, knowing he can go where he wants, on his own.

We had an offer on his truck the other day. Of course, husband said no. I was ready to sign the title over, but, husband is holding on. Then, the man said, "How are you still able to drive?" My sentiments exactly. It may have seemed cruel for him to say that, but, it was the truth. Husband was not amused.

Today is our last day for the garage sale. What I don't sell, I'll either keep or take to Good Will.

After this weekend, I am concentrating on packing up, getting ready for the move. Funny thing is, I haven't found another place yet. I have a lead on one, working on it, but, right now, I have no place to go. My friend called me yesterday and asked why I was doing all of this if I don't even have another place to go. "Easy", I said, "It's called Faith".

Friday, January 13, 2012

Goodbye to the "Big Kahuna"

Several years ago, husband bought a nice big BBQ. It was a charcoal one. We got it at Lowe's. He was so proud of that BBQ. We also bought a cover for it. He kept it so clean. When we would have friends & family over, he would grill on the "Big Kahuna" as I'd call it. People would comment on how nice it was.

We sold it yesterday in our garage sale. As I took the money for it, I looked over at husband. There was something in his eyes. I went over to him to give him the money for his BBQ. I wanted him to have the money. He looked up at me and I saw pain in his eyes. Real pain. He looked so sad. I told him, "Honey, you keep the money for the BBQ". He nodded his head.

As they were loading it up, I had flashbacks of using the "Big Kahuna". The laughter that was in my house, the people who would come over for our BBQ's. The food, the feeling of family and friends.

One of the last times we used it was right before husband was diagnosed. He had started the charcoal, but, for the first time, he could not cook on it. I did the cooking, all the while thinking, "what's wrong with him?"

I thought about the "Big Kahuna" the rest of the day and into the night. When I got up this morning, I looked out our backyard. There is a spot now that is empty where the "Big Kahuna" once sat.

How ironic that a BBQ could trigger so many memories. Happy memories. Memories where husband would be teased the he cared more for the "Big Kahuna" than he did his wife. Memories of husband showing everyone "His Grill."

I saw husband last night looking out the sliding glass door. He didn't know I was behind him. There he was, hunched over, holding on to a chair. A broken man. A man that once was so strong, full of life. As he stood there, he said, "Good bye "Big Kahuna", I'm so sorry I had to sell you".

So, yes, Goodbye, "Big Kahuna". I hope you bring memories to the new family. I hope you have many compliments on your ability to grill the best burgers in the state. I hope you are well taken care of.

I'm sorry too, "Big Kahuna". Sorry and sad.

Thursday, January 12, 2012


Husband has been so so this week. I have been getting rid of stuff this week by having a moving sale each day. Each morning, I find more things to get rid of. I am showing no mercy for things I do not use. I can't believe I have so much stuff.

Husband, on the other hand, is having difficulty in letting go. He cannot decide what to keep and what to get rid of. He did put his bike out and it was sold the very first day. That bike has only been ridden maybe 10 times. It was a nice Mountain bike. I see the struggle in his face as he sets something out.

We are not moving, yet, but, I want to get rid of a lot of stuff, making it easier for the move, when we do actually move. Plus, I am getting us into a smaller place, hence, no room for a bunch of stuff. Husband cannot help in the move, I have to do this myself. I want to make it as easy as possible for me. If I could, I'd get rid of the big furniture, get 2 lounge chairs, and poof, living room set. Me, I've always been a simple kind of person. No fancy schmancy here. Of course, I won't get rid of the big furniture, but, Lord, the thought of it makes it appealing.

Husband has been stumbling and falling more this week. It may be because he's been on his feet a lot with the moving sale. Don't know. Memory issues are present. He cannot deal with anyone when they come to our moving sale. I have to do the talking. Some look perplexed at husband, notice the cane, then notice his unstable walking, finally, turning to me and we make a deal. They don't ask, "What's wrong with your husband?", and I'm grateful for that. If I'm in the house and someone comes to look, he will come and get me. Like a child would.

Father in law came the other day. I am going to "invite" him to tag along when we go see Dr A on the 25th. I went yesterday to renew our insurance at UNMH. As I was sitting there, waiting for my name to be called, I started going through husband's medical records. This file is about 1 1/2 inches thick. Reading back on their Clinical Notes took me back. Back to before diagnosis. Some of the notes said they were "stumped" on what was wrong with husband. Always, though, they would add that there was a strong family history of "Early Onset Dementing Illness". Then, I came to April 26th, 2010. That was the Day of Diagnosis. I got tears in my eyes as I read what they said. They also noted that "Patient and wife were visibly upset, which is understandable, considering the devastating news I had to deliver".

Luckily, they called my name, and, I escaped from those pages. Those awful pages. During the renewal process, the lady said, "Because of your husband's illness, you will need to notify us if he passes before January of 2013." I just nodded my head.

There was a man in the next cubby, and, as I got up to leave, he glanced at me. I know he heard what the lady had said because he looked at me, smiled and nodded his head. I smiled back and got out of there.

Driving home, tears came to my eyes. No crying, just tears. When I got home, husband asked, "Everything go alright?" "Yes", as I smiled my Academy Award Winning Smile. "Good" he said and smiled back at me.

Wednesday, January 11, 2012

Finding Nemo? Finding Me?

This week, so far has been uneventful. Aside from the fact that I spilled my gut out here the last few days. It's nice to come here and do that. I felt better. I also feel that I need a lot of work. I'm a work in progress.

Getting older has made me take a really good look at me. I have also thought a lot about my childhood. I have discovered I am made of many layers. I am slowly peeling back those layers.

One thing I do know is, I am not phony. What you see is what you get. I tell it like it is, but, not to the extent of hurting someone. I don't like phony people. They make me feel uncomfortable being around them. I try to avoid those kind of people. Unfortunately, I know a lot of phony people.

I have been hurt by people. Their excuse? They tell it like it is. But, when you tell it like it is, you can also use a little tact. I would never want to hurt anyone. I just don't have it in me.

When husband was diagnosed, I thought our world would end. Well, it didn't. We're still here, a little worse for the wear, but, still here. There is always something good that comes out of a bad situation. I am beginning to feel that the "good" in my situation is, I am finding myself. I am learning more about myself everyday. I am finding that I can look at my past and my childhood and remember things that have happened to me, and trying to use it for the good of me now. It's not easy, remembering the past. Some of it is not so pleasant.

Like an onion. Peeling me back, layer by layer. Some of it hurts, some of it doesn't.

Husband has a disease. One that is terminal. He will not be here. His days are numbered.

One can choose to fold like a napkin. One could choose to shut the world off. One could choose to give up. One could choose to be bitter. One could choose to take it out on innocent people.

I choose not to be one of those. I choose to make the best of my situation and learn something from all of this. About me. Who am I really? One day I will find me. I will discover what I am made of.

With a husband or without a husband, I am finding me. And that's a good thing.

Tuesday, January 10, 2012

Speaking from the Heart

I do not like to be angry. I have an issue with anger. I am working on those issues. I can admit I have anger issues. It was hard at first to admit it, but, I am working through the issues I have. Please be patient with me, I'm not perfect; (gasp, shock) I am a woman, wife and mother. I love with a passion. I am fierce when it comes to protecting my loved ones. I am like a mother bear when it comes to my children.

Everyone has faults. We all fall short. I am not alone. This blog has been my battle ground. I come here each morning to say what is on my heart. I want to look back on it one day and re-read some of my posts. I want to see where I've been and where I am going. I have also learned that if you put it out there, you may be asking for comments that are not welcome. I can honestly say the comments I have received have been uplifting, often times bringing tears to my eyes. I feel loved, I feel like there are people out there who "listen" to me, I feel wanted when a commentator says they can't wait for my next post. It feels good, hence, I continue to post.

My hope one day, is for someone beginning this journey into hell, will stumble upon this blog. There is someone out there right now who may be wondering where their life is going. There may be someone out there who is searching for answers. There may be someone suffering from early stages of a disease who may find this blog helpful to them. A housewife who has a spouse or partner suffering from a disease. My hope is that by blogging, each and every day, coming here with heart in hand. someone, somewhere will read my words and it will comfort them. My wish is to help those who are suffering, to let them know they do not have to suffer alone anymore. We will suffer together.

It is hard sometimes for me to blog. My heart speaks to me and the words appear on screen. I oftentimes wonder what people think of my posts. Will it offend you, will it make you laugh, will it make you cry, will it give you hope, will it carry you through the day? These are my words, speaking from my heart. Am I boring to some? It this blog just a humdrum blog? If so, then I apologize in advance. But......................................................

This is My Journey. This is My Story.

Monday, January 9, 2012

Done, done and more done

I did not have a good weekend. I had my eyes opened to a few things that are disturbing to me today. Maybe I shouldn't dwell on something I cannot change, however, it bothers me that no matter what I do, I am not taken seriously.

Husband informed me that between him, his dad and step mother, they have decided that he DOES NOT have Dementia, he only suffers from Drop Foot Syndrome. Yep, you heard right. Together, while he was visiting some time ago, his step mother, Lupe, looked up Drop Foot Syndrome on the internet. It said that it could be caused by damage to the spinal cord. So, together, those three decided right then and there, without further ado, that it is in fact NOT Dementia, therefore they have diagnosed husband to be suffering from Drop Foot, due to a fall he had 17 years ago. Yes, he did have a fall, but not to the extent that it caused any damage to his spinal cord. I was there, they weren't.

Dr A diagnosed diagnosed his Drop Foot in August. He said, and I quote, "Due to the on going damage to the frontal lobe, patient suffers from Drop Foot Syndrome associated with the Frontal Lobe Dementia." So, husband only heard "Drop Foot Syndrome" and ran with that. Told his dad, and together with the step mother, they did their own diagnosis, at home, without a Neurologist present.

I thought I had cleared all this up in early December, when father in law approached me with this convoluted idea he had. I had no idea the three of them had "researched" their diagnosis.

I am at a loss as to what to do. I am mad, frustrated, at a loss for words (a first for me), and just plain sick of the entire situation. I have had thoughts (visions) of just dropping husband off at his dad's house and riding off into the sunset, (or, in my case, driving). Be done with it all.

This is so hard on me. I don't know where to turn. I am thinking of speaking directly with Dr A before our appointment on the 25th. He, Dr A, needs to sit husband down and give him the business himself. I am tired of being the "bad guy". In fact, I may invite my father in law and Lupe along for the ride. I can drop them all off at the Dr's and I'll go get an espresso. Together, those three can hear the facts and truth. Let them argue with a Neurologist, I am done. Together, the three of them can discuss their "findings" with a top notch Neurologist that specializes in Dementia. Have at it!!

After all this that I learned, I did something I never thought possible. Husband was walking from the bedroom into the living room, and fell, flat faced on the carpet. I just sat there, did nothing to help him up. Nothing. Kristen ran to him, helped him up. I still cannot believe I just sat there. What kind of a person am I? Am I that cold hearted? Am I really deep down a mean person?

After husband recovered, he said, "I can't believe you didn't help me." I can't believe it either, I thought.

When you are the one caring for someone like husband, when you are the one who sits up at night, watching him have tremors that rock your bed, when you are the one who has to make sure he doesn't wander off and get lost, when you are the one who has to tell him where the light switches are, where the silverware drawer is, when you are the one who answers the same question over and over, when you are the one who cares for someone like that, tell me, are the Neurologists at UNMH and I wrong? Are we making all this up, just to play a cruel joke? That's pretty cruel if you ask me.

Know what's cruel? Family members not believing you, making you out to be the bad guy, making it look as if you WANT something to be wrong with him, making you seem like a fool.

I don't know where to turn. I have no one who would even listen to me. No one! But, I do know one thing.

I am done!

Sunday, January 8, 2012

One flew over the cuckoo cuckoo's nest

Discussions on selling the truck did not go well. Why am I not surprised? Because I knew it would not go well. I just needed to plant a seed, have him think about it, then, eventually, I will sell the truck. Just don't know when.

The conversation started out fine. I expressed to him how stressed I have been over finances. I glanced at his face. "The look" was there. I knew I had lost him at that point. No use even continuing. But, did I stop there? No. I thought maybe I could break through to him. Who am I kidding? So, it did not go well.

I decided to take a drive and clear my head. Just me, alone. I don't get alone time much. I spent a few hours away and I came home refreshed.

When I got home, he told me that he was talking with a fellow from the garage sale next door. This person seemed interested in buying the truck. I was interested at that point. Seems this fellow would trade husband his truck, which is an automatic, we give him our truck, and, hold on to your seats folks, we also pay him $700.00. Yes, you heard right. We would have to give him money on top on trading his truck. Are you kidding me? The whole point was to save money, pay off a few bills and set some money aside to move on.

By this time, I was heading toward a wall, any wall, so I could beat my head against it. Husband was excited at the prospect of getting an automatic truck. Said it would solve our problems. What?

Yep, this is what I live with. Every day, all day. My first reaction to husband was to say, "Are you crazy?", then, I realized, well, he is. Folks, you have to have a sense of humor to live in my house. It's one of the requirements I enforce.

God made sure I had a peaceful afternoon, by myself. I needed it. After all, He knew I was coming home to this new development that, I have to say, I started with the "suggestion" that we sell the truck.

Be careful what you ask for, you may just get it. Oy vey.

Saturday, January 7, 2012

Anyone want to buy a truck?

Had a rather quiet day yesterday. Husband seemed OK. Confusion for sure, but, not agitated. He gets fixated on something and will not let it go. This can go on for days. His newest fixation is our Car Insurance.

For the last two weeks, he has asked me daily when am I going to pay the insurance. I have told him it is due on the 5th of each month. He seems satisfied with that answer. A few hours later, same question. Yesterday morning he asked again, I told him it has been paid.

Last night he told me that he and Jack are going to Sports Authority today. I said that was fine. Then he said, "Do you think it will be safe?" "Safe? Of course it will be safe.", I say. "Well, what about the insurance?", "The insurance? It's fine, and, you need to stop about the insurance, OK?", I tell him. By this time, I am agitated. Enough, I think.

I know he can't help it, I get it. It just gets maddening at times. Then, I beat myself up over my getting stern with him.

I am in the process of trying to convince him that it is time to sell the truck. It sits in the driveway, he doesn't drive it, I don't like to drive it and Jack nor Kristen know how to drive stick shift. It costs me money for the insurance each month as well. I eased into it yesterday morning. It's going to take some convincing, but, if I sold the truck, I could pay off a few bills, plus save me money in car insurance. He is very stubborn when it comes to the truck. It's "HIS" truck, he says. I understand it's a "man thing" to have a truck, but looking at it, all I see are dollar signs. I have some work to do on that issue.

All these decisions that are left up to me to make. He will try to argue with me on some, yet, he can't decide anything anymore. He cannot think clearly, but says he can. He can't decide what he wants for breakfast, so, I make that decision for him. I may just have to sell the truck and tell him about it. That won't be fun, but, I need to get rid of the truck. Any suggestions on how I'm to go about this one?

So many decisions, so few choices. This selling the truck is weighing on me.

Today I will clean house. Not much else going on. Every day is the same around here. I woke up frustrated today. I woke up resenting husband today. I woke up resenting what my life has become today. I woke up feeling helpless today. I hate waking up and having these feelings.

Susie is supposed to come today to trim my hair. When she comes, I will put on my "Academy Award Winning Smile" and play pretend. I'm good at that, ya know.

Friday, January 6, 2012

A secret

I had to take an very old friend to the Dr's yesterday. She is a widow and had fallen and fractured her knee cap. She had to have surgery right before Christmas to repair the knee cap. Yesterday was her check up from surgery.

The Dr's I took her to was the same medical group I went to when I was pregnant with Jack. Sitting there brought back so many memories of happier times. Before we went upstairs to the Orthopedic clinic, we had to go to X-Ray. It was also the Ultrasound area. I watched an excited couple come out, looking at pictures of their future baby. She was in the early stages of pregnancy. The dad kept looking at the pictures and smiling. They looked like they were walking two feet off the ground.

Oh, the memories of those times. How special I felt at that time. The excitement of having another baby. The wonder of it all.

At the time, husband's mother was in the final stages of this horrific disease. She passed away on February 16th. I was 3 months pregnant.

On August 15th, they admitted me for inducement. The baby was large and, I was 1 week overdue. When we got to the hospital, they took my blood pressure. It was a little high, so they shooed everyone out, had me lay on my left side, said they would be in to check it in 20 minutes. I laid there for a few minutes, willing my blood pressure to come down, when, all of a sudden, I heard this soft voice say, "Your baby looks wonderful". As she said it, she touched my big toe. I turned over and saw this beautiful woman. She had stark black hair, very pale skin and just so beautiful. As she touched my toe, I felt a small surge of electricity in my body. To this day, I can still feel that touch on my big toe.

I asked about my blood pressure, she said it was perfect. I never felt her take my blood pressure, but she was a nurse and I thought maybe I had dozed off when she had taken it.
I kept looking for that same nurse through out the day. I never saw her again.

This big baby would not budge from my womb. That night, they took me off all medication, told me to get a good nights sleep, they would try again in the morning. The next morning, they broke my water. 3 1/2 hours later, Jack entered the world. Big boy, almost 10 lbs, it went so smoothly. I felt on top of the world.

Then, it dawned on me. Jack was born 6 months to the day his grandmother passed away. A few weeks later I was thinking about that day and thought about the nurse who had touched my big toe. Who was she? She looked like a nurse, but, why did I not see her again? Out of the blue, it all made sense. I believe that was husband's mother. She was there that day, I just know it.

As we speak now, I can feel that touch. It has never gone away.

Sitting there yesterday, I thought about all of it. The pregnancy, the happiness we felt, but, also, the shadow hanging over us as we watched this disease take her life.

Jack knows all about his grandma. He knows how he was born 6 months to the day of her death. He knows it all. Every time we speak of her, he smiles a smile that I believe is known only to him and his grandma. They have a special bond. They share a secret. It comforts me to know that.

Wednesday, January 4, 2012

"On Call" Mom

Yesterday was trying to say the least. I was wiped out by end of day.

I called Dr A, we have an appointment on the 25th of this month. That's the soonest I could get him in. Dr A heads up the Mind Science Center at UNMH, he's very busy, but, a very good Dr. I don't know him as well as our other Dr, Dr Q, but, I trust in him. I am going to fax or email a list of my concerns pertaining to husband. That way, when we go in, we can eliminate the questions and concerns I have regarding husband's condition. Sort of give him a heads up on what's going on to date.

I take husband to Physical Therapy today. He doesn't seem to want to go. He tires easily nowadays. I have a few errands to run, so, I will take him in, then off to my errands. Susie works there, she will make sure he doesn't get lost or wander off.

I was sad all day yesterday. Quiet last night. It's sad watching husband struggle daily. It's sad watching him fight this disease. It's sad watching him stumble while trying to walk. It's sad listening to him make excuses as to why he stumbled. When we are walking, if I notice he's about to fall, I grab onto his upper arm. He always shrugs my hand away. Says he's fine, he knows how to walk.

Husband works harder fighting this awful monster than he has ever done before this horrific disease came into our lives. He knows he's fighting a loosing battle, he knows eventually he will lose that battle, but he continues to fight anyway.

And it's hard on me, Jack & Kristen watching him fight. It bothers the kids more than it does me. It hurts them to see him struggle daily with his memory loss and ability to walk. They always look to me as if I can stop it. Mom always takes care of everything, but, I can't fix this.

The jerking last night was severe. It's hard for me to go to sleep at night. Just when I start to doze off, the tremors will start, waking me up. This goes on for about 2 hours after I have gone to bed. I usually fall asleep around 12 or 1 AM. I wake up in the middle of the night, check on him, make sure he's breathing. Since this monster came into our lives, husband's sleep is restless. He jerks, chokes, tosses and turns, yells out loud and then the tremors start. Most people go to bed for rest. I go to bed and am "On Call."

So, this is where I am at today. Sad and tired. Sad that I have to watch husband struggle another day. Sad that we don't have a normal life anymore. And tired. Tired of watching husband struggle daily. Tired of being the only "adult" in this house. Tired of making all the decisions. Tired of all of this, but, mostly tired of this monster who has invaded our lives, destroying my husband.

Today, I just want it all to go away.

Tuesday, January 3, 2012


The past few days have been upsetting to me. Husband seems to be in a constant state of confusion. There has been no break in this. The tremors come and go all day, all night. I am going to call the Dr. I think he needs to be seen, maybe there is something else he can take to slow the tremors down. I don't know.

His attempt at walking is awful and pitiful. Yesterday morning, he got dressed, came out to me and said, "I didn't put my braces on, I'm going to go see my dad, but I will put them on when I get there." He has been ordered by all Dr's not to drive, and, he doesn't, I won't let him. Where this came from, I have no idea. I told him that he has to wear the braces all the time. He said that he can't drive with the braces on. I sat him down and explained that he can no longer drive. His legs are too weak. His truck is a stick shift, making it difficult for him to shift. He got very angry with me, said he did not want to talk to me. I held my ground, told him I was doing this to protect him, not to harm or embarrass him. He started to cry, said his life was over and there was no need to go on. Jack came to me and said, "Mom, don't let him drive. You have to stop him." I let Jack know husband would not listen to me, so, Jack went into the room and told his dad that he can no longer drive. Seemed to work, husband listened to him. I'll remember that next time and let Jack do the talking.

Oh boy. Later, he wanted to go Sports Authority and look around. I firmly told him he was not driving anywhere, but, he said Jack would drive him. Jack gladly took him.

Even calling the Dr will not be of much help. But, I feel more comfortable letting him see husband, examining him. I know the disease is taking over his body, ravaging it. I know that.

There are days that I say I can do it. Then there are days that I shake all day long. I hope I am strong enough. I have to be. He is a toughie, for sure. Stubborn and prideful. He has just enough fight left in him to where he argues with me over the smallest of things. I'd like to think it makes him still feel like a man. Most of the time, I'm amused by it, sometimes, not so amused.

So, here I am today. Don't know what today will bring as husband is not awake yet. Who knows?

Every morning I wake up with a little spark of hope. Hope that I will have a good day, hope that husband will be "with it", hope that I will once again see life in my husband's eyes and, hope that we will laugh.

I think I miss that the most. The laughter.

Sunday, January 1, 2012

Welcome to My New Year

Happy New Year to all.

I haven't posted in a few days. Been a little busy here.

Husband has continued a slow decline. Confusion has invaded him to the point he has trouble pronouncing words.

I made Salisbury Steak the other night. On Friday, he asked me if there were any leftovers. But, he could not pronounce the word Salisbury Steak. I could not figure out what he was saying. Finally, he said, "That stuff you made one time. It was good, what is the name of it again?"

I have noticed he can no longer lift his right leg. His braces fit into his shoes. Then, they go up to the knee. I had to help him with his shoes/braces yesterday morning. He was having trouble getting the right shoe/brace on. I told him to lift his leg so I could guide his foot into the shoe. He said, "I can't lift my leg anymore". I looked at his foot. The toes have curled inward. I tried to straighten them out, making it easier for him to put his shoe on. No use. His toes are stiff and curled.

He is having tremors all day long now. When he walks or sits. This only used to happen occasionally. It is now happening all day, every day.

Walking is really, really labored now. He looks like he will topple over at any given minute. The spastic movements are in his arms and shoulders now. This disease is crazy. Last week, there was no arm involvement. This week, it's there. Almost overnight the damage has invaded his upper arms.

Today is the beginning of a new year. It is also the beginning of the end for husband. I can see it. The life is gone from his eyes again. I saw it before Christmas, then, gone. He tries, really tries to be "normal". He wants so badly to be "normal" again. Only, his brain and body have failed him.

What will 2012 bring us? More than certain, it will bring us heartache and pain. It also will most certainly bring an end to a life. My husband's life. How will I cope? Same as always, God.