Places to go, People to see

Today, I am going down to the Medicaid office. Some people have told me that all they will do today is set an appointment. I hope that is not the case. If so, I will go to my scheduled appointment with the guy that never showed up for my original appointment. That one is scheduled for this Thursday morning. We'll see if he shows up.

I am beginning to loathe this state. You just can't get help anywhere. All of the state's money is being spent on helping people who can work, but don't.

First senario: 15 yr old girl gets pregnant. Girl's momma has been on welfare since having her. At the advice of momma, girl goes down, applies for Medicaid, is approved the same day. Girl sees Dr's for 9 months. After having said baby, girl gets Food Stamps, free formula, the state finds her an apartment, sets her up in apartment, gets cash assistance, reduced utility costs, and baby gets free medical anything. Girl does not work, cruises around town, gets new boyfriend, boyfriend works, girl moves boyfriend in with her, girl does not report boyfrined living with her. Girl gets pregnant again, up go her food stamps, moves to a bigger and better apartment, does not pay a dime for rent, or, if so, reduced to paying 10% of the rent, the state picks up the difference, up goes her cash assistance and they live happily ever after. Does not bother to get married, will loose all her benefits(?), and the cycle of life continues.

Second Senario: Man works from the age of 15. Pays taxes, pays for own housing, buys own food, pays full price for utilities. Gets married, has child, pays for all Dr visits, pays for delivery of said child. Mother nurses to avoid formula. Pays for medical insurance for mother and child. Man gets sick. Cannot work anymore. Man told by Dr's that he is going to die, has 1-2 years left to live. Still has wife and child. Man goes on Social Security Disability. Man still pays full price for housing, buys own food, clothes for child. Man needs help to cover rising medical costs. Man is told he does not qualify for medical assistance. Man cannot walk anymore. The wonderful state of New Mexico issues him a Handicap Placard. Mighty big of them.

So, after much soul searching and talking, Jack and I have decided to leave this state. When he is finished with school next May, 2012, we will be saying goodbye to the Land of Enchantment and going to Colorado.

On to my next adventure...........................................

I don't know if anyone reads this blog, but I continue to post. Sometimes I think why post, but, it helps me. Get it down in writing, re-read it. Does it makes sense to anyone else? I don't know, but it helps me get through each day.

This past week has been especially hard. Leon has never made it "back". He has been in his own world for weeks now. Like I've said before, we have always had a "honeymoon" in between episodes. He has always come "back" from wherever his mind takes him, maybe not all there, but he has come "back". Not so this time.

Last night for instance. He came out of the bedroom and said, "tomorrow, when you get home from your meeting, Jack and I are going to go visit my Dad." Huh? What meeting? So, I said, "what meeting?" He gets agitated, says, "your meeting over there". "Where?", I say. By this time, I know he is halucinating, so, easing him down, I say, "honey, I have no meeting tomorrow, it's Sunday tomorrow". He then looks so surprised and says, "oh, well, were going to go visit Grandpa tomorrow. Jack wants to see his Grandpa". "Ok", I say. I turn back to my TV and mumble, "Damn".
After one of these episodes, he goes to sleep and sleeps for hours. Last night, he stayed awake for a long time. It's crazy, scary and sad all at the same time.

His legs are beginning to fail him. His legs don't move alot as he tries to walk. They remind me of wood, they're just so stiff. He has used the walker from time to time for a few weeks now. He did use it at the grocery store and he was able to keep up with me.

Jack is out of school for the summer now. Leon seems excited that he will be home. Jack makes such a big effort to spend time with his Dad. He watches over his Dad. Jack and I talk about his Dad, alot.

I have a Dr's appointment for Jack. He has been having anxiety attacks and depression. This, I know, is tough for a young man to go through. I just hope the Dr can help him. We have agreed that counseling could help, it's just finding the right person to counsel him. I want to see Jack well again. Dealing with a terminally ill husband is hard enough. Add a depressed teenager, fearful of the unknown and you get one stressed out me.

Nobody said this was going to be easy, and trust me, it's not. I continue to march on, it's all I can do. It would be nice to get a break, but, I'm in it for the long haul. And a long haul it will be. I have a plaque on my kitchen wall that says, "I see the moon, the moon sees me. God bless the moon, God bless me". Amen.

Where to Live?

Jack and I, for the past week, have been discussing what we are going to do when Leon is no longer here. We both agreed that we do not want to stay here. Just too much on both of us.

At first, we said Denver. Then we thought about it and said, well, maybe. We just don't know. What we do know is we are going to stay together. We will need each other. Not that he'll live with me forever, but for the first couple of years, it's just better this way.

Once I receive my Widow's Pension, I will be allowed to work, but can only earn so much. The money I will be receiving will pay rent somewhere (I hope) and not much else. Jack will have his benefits, but, again, not enough to live on. So, if we stay togther, we will have enough money to live on.

I may try to find maybe a housekeeping job. A few days a week, a few hours a day. Something that will buy weekly groceries.

This is something that I think about constantly. I need to have a plan, I don't like surprises. But, this is my future and I have to have a plan. So, everytime Jack & I are alone, one of us will say, "how about Fallbrook?" Or, "what about Oregon? University is there?" Or, "what about Arizona?" So many talks, just no decisions yet. But, we need to make a decision soon, as time is not on my side.

We have had a rough week. Leon's mental state is deteriorating more and more. It's been rough. I wanted to talk to my Mother the other day about this and I called her. She was too busy to talk, her oldest Son was visiting her. When I got off the phone, I felt so alone. Lost and alone.

My son's fiance mentioned to my son one time that she didn't think Leon was bad off. Made my blood boil. My son explained that they don't live with it, and only see what is portrayed. She's a lovely girl, only very young and does not see what Jack & I see everyday. But, still, come on. Ridiculous.

This is Memorial Weekend. Going to take flowers to Leon's Mom's grave. The hard part is not visiting her grave. The hard part is knowing your husband is going to be there within a year.

Medicaid Update

Well, let me just say one thing. In my life, I don't know why I was so surprised by events yesterday. I have to fight harder than the average person, and, yesterday proved once again that the fight is still on.

I arrived at my appointment 15 minutes early. The girl at the desk told me the Medicaid Rep was not in yet, to have a seat, he would be there shortly. After waiting 30 minutes, the front desk person called him, left him a message. When that didn't work, she called his supervisor, explained that he had a client waiting in the Taylor Ranch office. After 1 hour (yes, 1 solid hour), he finally called back and said he was not coming into the Taylor Ranch office until next week.

The front desk girl apologized for him, and I made another appointment for next Thursday.

I have made up my mind that on Tuesday, I am going to the main office, up in the North East Heights. I am arriving before they open their doors, and will sit and wait (and, probably fight) until someone sees me and apoproves Leon for Medicaid. And my appointment for next week? Why, I am not going to cancel. I will let this so called representative come all the way to Taylor Ranch (where I live), and sit and wait for a client to show up. When that client doesn't show up, I certainly hope he will call me, to remind me of my appointment. And then, I will explain to him that this was an important appointment to me, one that involves End of Life decisions, that he so easily dismissed. My plan is to make him feel like a heel.

So, here we are, no Medicaid for Leon, I am no closer to getting it for him than I was yesterday. I had made this appointment weeks ago. But, the fight in me somehow finds it's way out, and I continue on. I get so tired of all of this, but somehow, someway, the strength comes out and I eventually win out. But, why? Why do I have to fight for everything?

If it is the expense they (the state) is worried about, I will tell them that it won't be that expensive. He only has maybe another year to live anyway. Then he will be gone, they can wash their hands of him, issue Medicaid to a young Mother wo has a kid every 18 months, doesn't work, doesn't know who the Father of her baby is, gets State Aid to pay her rent, gets Food Stamps to buy food, gets WIC to buy formula for her newest baby and gets Cash Aid to support her. Who cares if my husband has worked for over 30 years, paid taxes to help those in need, never asked the state for anything? Who really cares?

Oh, if only I was running this state.

Medicaid

Have an appointment this morning with Medicaid. Hoping they will approve Leon for this. With his medical costs rising, I can no longer pay out of pocket.

What makes me furious is, Leon worked all his life, taxes were taken out to support all these less than fortunate people in the system. Now, when he needs it, it seems like I have to fight for it. Not fair. I have let my opinion be known to organizations, they agree, but, then say, "were sorry, there are no funds".

So, today, this morning, I am going to tell them I will not leave the office until I get an approval for Medicaid.

If he doesn't get approved, you'll probably see me on the 6:00 news as the crazed lady who went off at Medicaid. Making sure I do my makeup and hair just right today for my television debut!!

Carrot Cake

Yesterday was a very strange day. I felt it when I woke up and it followed me throughout the day. There was a strange sadness all around me. I tried to make it festive for Leon, only I could tell it was a strange sadness for him too.

It was a very quiet day, beautiful weather, but this quietness was so loud, it made my ears roar.

He slept most of the afternoon. I made him his favorite: Carrot Cake. I woke him up for his birthday dinner. He ate a little. But that quietness was just so overpowering. He had his birthday cake, then went back to bed. Jack went in and together, they watched a movie. I could hear them laughing at some silly movie, but, that strange sadness would just not leave me. It warmed my heart that Jack made the effort to be with his Dad. He is such a lovely boy.

I cut myself a piece of the carrot cake. It tasted like sand to me. Oh, I suppose it was delicious, but to me, it tasted like sand.

Later, after Jack had gone to bed, Leon hobbled out to me. Sat down, and that quietness surrounded us both. He then said, "this is my last birthday, I can feel it, and I'm sad and scared". It sounded so loud to me, then, I realized, that's what that strange quiet was to me all day. I knew this was to be his last birthday, like God was telling me, this is it. We talked for awhile, he then said, "I want to go to LA to see your Mom". Of course, that is out of the question, but I went along with it, said we'd have to see. That seemed to satisfy him.

After yesterday, I have come to a decision. I will never eat carrot cake again. Never.

Traumatic Birth

46 years ago today, in what was a small town at that time, a young woman, age 18, screamed that she was losing her baby. It was too soon for her baby to be born. Her husband rushed her to the hospital, where shortly after, gave birth to her first and only child. Doctors said there was no hope for this baby. He weighed 2 lbs 14 ozs and was 12 inches long. Two Priests came to baptize this baby.

45 days later, the young parents took their baby home. He was fat and healthy.

46 years later, this baby is once again fighting for his life. His once young mother has passed away from a horrible disease that robbed her of everything. This once young mother passed this disease on to her own baby. No one knew 46 years ago that this is what would happen. No one knew that "the curse" would strike again.

This morning I am thinking about all those years ago, when this baby came into the world. How grateful his parents were to the Doctors and Nurses that saved his life. How they looked to the future with such hope and happiness. How they loved this tiny baby and vowed to give him a wonderful life.

But, it was not to be. A young woman was struck down with what her family called, "the curse", and this monster was brewing in her child, waiting like a thief in the night, to strike her child. And strike it did.

As I type these words, I feel a sadness for all that was and is lost. No, it's not fair, but it is what it is. A year from today he may be gone. What a statement. And that little baby, the one who Doctors and Nurses fought to save his life, will once again fight for his life. Only, this time, he will loose.

Conversations with Jack

Yesterday afternoon, I had the best conversation with my son. We discussed school, his desires, his goals and what are we going to do when his Dad is no longer here.

I let him know that I would like us to stay together as we will need each other. He agreed. It felt good to get that off my chest. I asked him if this conversation bothered him, but, he said no, it had to be done.


We are thinking seriously about moving to Denver when this is all over. Justin & Anne are there now, two of my neices are there also. Denver is more expensive that Albuquerque, but it will give Jack more of an opportunity to continue on with his schooling.

I went to my grandson's baseball game yesterday and all I could think of was movng to Denver. Could I really do it? Could we afford this? Would I miss Albuquerque? Time will tell, but, for now, we would like to go to Denver.

I have many memories here, some good, some bad. It will just not seem like home anymore, once Leon is gone. No reason to stay.

Leon will be 46 tomorrow. We don't know how much time he has left. His grandfather, 2 uncles and his own Mother all died by their 47th year. The Doctors said a year ago that he has 1-2 years. I have been playing those numbers in my head. Doing the math. What a lousy way to live.

I have made a vow to make this, his last year, the best. Please think of us, tomorrow and every day thereafter.

Birthday's

Tomorrow will be my twins birthday. They have families of their own now, one lives here, the other lives in Arizona. I won't celebrate with Tish, she's too far away. I may celebrate with Pat, but we'll have to see.

I told them both I will get them something on the 3rd of June, when we get paid. They don't expect anything from Mom, but it's nice to give them each $25.00, that's the least I can do.

Monday, that's Leon's birthday. He is very excited that it's his birthday. Like a child. I told him last week I couldn't get him anything for his birthday until the 3rd of June. A few hours later he said all I have to do is give him $100.00 on his birthday. Once again, I explained that we have no money, it'll have to wait until the 3rd. He looked a little sad, but said OK. Later on that day he came to me and said all I have to do for his birthday is give him some cash. I once again explained we have no money, that to wait until the 3rd. This has gone on all week. Each time, he looks so surprised that we have no money, doesn't get angry, just surprised.

I feel bad I can't get him anything. I would love to give him a birthday party with the cash that he wants, but I can't. I will cook him a special dinner and treat him like a King all day Monday. That's the best I can do.

But once again, when he is asleep, I look in on him and, the guilt sets in. Man, I hate this guilt that I feel. Why do I feel so guilty? Because I failed him? Because I can't give him what he wants, when he wants it? Because I failed myself? What is it?

This week has been hard. In more ways than one.

Our "Visitor" will not leave

With Dementia patients, they go in and out of reality, until the monster completely destroys the brain. Leon's Dementia comes and goes. As I've said in previous posts, I call it our "Honeymoon" period. He will be "with it" for several days in a row, then, bam, off to another world.

We had a good period for about 1 1/2 weeks about 3 weeks ago. When the "Honeymoon" ended, he was worse than ever before. It has been 3 weeks with no sign of him coming out of it. This is the longest he has ever been this bad.

Is it the beginning of the end? I have noticed the past several days that when he is asleep, he "talks" alot more than usual. He can talk so loud that it sometimes wakes him up.

His walking, or, his attempt at walking is more unsteady. Hard watching him try to walk. Will not use the walker. Says his cane helps, but yet, he uses the cane and grabs onto walls and furniture to help him walk.

I have to get groceries today. He loves to go with me. I absolutely hate taking him with me, but if I don't, he will not behave the rest of the day. When he wants something and I tell him we cannot afford it, he will have a fit right there in the store. That's fun.

So, I think our "visitor" has come to stay this time. It's been too long. I have a feeling of dread inside me. But, who am I kidding? I knew this was going to happen, that one day he would not come back.

Everytime we hit a new stage in this disease, I am caught off guard. I know what to expect, did my research, have it all down. But, when it actually happens, it can really throw me off. Kind of like riding a roller coaster; you know the big drop is coming, but when it actually comes, it still takes your breath away.

Reflections of a Mother

When my children were little, I would put them to bed, relieved the day was over. Taking care of 6 small children, (my little ducks as I used to call them) was no easy feat. Some were walking, some were running, some were nursing, some were talking and some were screaming. At the end of the day, I would be totally exhausted. Couldn't wait to get them to bed. Once they were all asleep, my mind would go over the day. Did I do enough for them today? Did I feed them, guide them, help them, cuddle them, kiss them, but, most of all, did I do enough to show just how much I loved them? Looking at their precious faces as they slept, my heart would hurt. I loved those babies with every breath I took. Still do.

Now, here I am again. Taking care of someone who can no longer do alot for himself. His mind is going and he needs me more than ever right now. He depends on me for everything. I do get frustrated, especially when I start to do something and he "acts out", like a 2 yr old would. Once again, I have no alone time for just me, except at night. Once again, as I check on him after he has fallen asleep, automatically I check his breathing, his thrashing, his "mumbling", his choking sounds and I begin to reflect the day. Did I feed him right, did I do enough for him today, did I show compassion, did I comfort him when he forgot where the kitchen was, did I laugh with him, and most of all, did I make him feel secure and show the love I have for him?

Ah, God prepared me for this a long time ago. When those 6 little babies were "given" to me, to love, to care for, to comfort and to guide. I say 6 because even though I have 7 children, my Jack came late in life, a time when I had "been there, done that". It was so easy with him, still is.

So, as I reflect on my life as a Mother, I am once again transported back. Back to when the highlight of my day was when they were all asleep and all was quiet. I now look forward to when he goes to sleep at night and my mind can try to get a moment. But, once he is asleep, the questions come back. Did I do enough for Leon today?

Within a year, all will be quiet. I won't have to reflect my day with him anymore. My house will be still all day, every day.

Can I live with the quiet? Can I live with myself, knowing I did all I could with what I had? I ask myself that question every day. There is no answer, time will tell.

One day, I will go before God. He has given me a hard life. As I sit here today, my only salvation through all of this is to hear the voice of God say, "Well done my good and faithful servant".

Hear me!!

When I began to notice something was off with Leon, about 6 years ago, I said nothing. I made excuses for him. It started out small, those little things that for people who were not around him alot would not notice. He seemed fine, but it was those little things that kept nagging me when I couldn't sleep at night, thinking, "Has it struck Leon? Or, is it just me?"

Then, his walk suddenly changed. Most would call it a "limp". But, he still seemed "normal" to the outside world. As the "limp" became worse, I started my internet research. That's how I "diagnosed" him. I just knew deep in my heart and soul that's what it was.

I had voiced my concern to some. It was brushed off, there was noting wrong with him. As usual, I did nothing to stand up for what I believed to be Dementia. Maybe they too did not want to believe it. I don't know.

When we finally got our appointment with his Neurologist, I told the Dr that I thought it was Dementia. I had narrowed it down to Lewey Body Dementia or Familial Frontal Lobe Dementia. The Dr said that it was hard to diagnose and they would start the testing. This was in January of 2010. In April 2010 after test after test, we went back for a consultation with one of the Specialists. After they delivered the bad news, it was late in the afternoon, we were walking out of the lobby, when our primary neurologist ran out to the lobby and called us in his office. As we sat down, he look straight at me and said, "My God, you were right".

Why didn't anyone listen to me in the months before diagnosis? Did they honestly think I was making all this up? It bothers me to this day.

What people don't see is this:
Leon "talks" to people in his sleep, carries on full conversations.
Leon panics when the house phone rings. Sounds funny, but if you saw it, well, it's pathetic.
Leon chokes in his sleep.
Leon asks several times each day what day it is.
Leon cannot walk without holding on to furniture or walls now when at home.
Leon leaves lights, water, TV on, forgets to close doors, forgets to close cabinets.
Leon can't distinguish the freezer from the frig.
Leon can barely operate the microwave, always asks for my help.

Made my point? But, in the dead of night, when I can't sleep because he is "talking" or choking, I think back to when I needed someone to lean on, scared to death that he got what the family called, "the curse", thinking it was all in my head, and I feel alone.

So, if someone ever comes to you with fears that their loved one is desperately ill, don't treat it as if they don't know what they're talking about. Give them the support and strength they need to face it head on. Be there when they need to talk. As I'm going through this and now know how hard it is on the surviving spouse, lend a hand or a voice or just let them know you are in their thoughts. Trust me, we as survivors of a terminally ill spouse need it. We need love too.

Warning: Long Post

A friendly wave or a nod as we take our trash out to the curb on Friday morning is about all anyone does on our street. We are all friendly, just never really stop to talk. Once in a while, our neighbor to the right of us does stop to chat, he's very friendly, a widower for many years, retired from the Post Office.

Our neighbors' to the left, well, we have never spoken to them. I hear them all summer as they have a pool and, on weekends, I hear the laughing, splashing and smell their BBQs.

On Saturday, I noticed they were having a garage sale. Leon went over, came back and told me they had some nice stuff. So, me, being the bargain hunter that I am, went over. I can honestly say that, they are the nicest people. I told Karen that I hear them splashing all summer long in their pool. She told me I was welcome to swim anytime I wanted. As we sat down to bargain for a very old German made grandfather clock, 61 years old, we got to talking. She told me her Father passed a year ago and her Mother had moved into a smaller place, so she was getting rid of the clock. Too many memories. She then told me that her Mother is taking care of her Grandmother who has Dementia. She said that it is one of the hardest things her Mother has ever done. She said that to care for Dementia patients is one of the toughest jobs, especially if it is your Mother. "Or husband", I said. She then stopped talking, looked at me and said, "Oh my gosh, your husband?" I nodded. "Oh, I am so sorry. I knew something was wrong with him, oh, I just realized it. It's the eyes, they're so,,,,,,blank". After many "I'm so sorries", we struck a deal with the clock. Need to get it oiled, but it sure is beautiful, and I paid next to nothing for it. Maybe she felt sorry for me.

Jack has been pretty sick for a few days. Took him to the Dr yesterday. He has Strep Throat. As she was writing his Rx, she said, "Mom, do you need a note for work?" I said no, I don't work anymore. She said, "Must be nice to be able to be home." And then I said, "My husband is terminally ill, so I had no choice." Oh, the look on her face said it all. She felt horrible, but I said, "it's OK, happens all the time."

I hate having to explain why I'm no longer working. I wish I could say the reason is my husband earns enough money. Or, I am wealthy.

Went to Leon's Mother's grave on Sunday, for Mother's Day. I bought flowers for her. Leon will be right next to her. As we were leaving, he looked back and said, "See you soon."

Did you really have to say that? Really?

Mother's Day Weekend

So, tomorrow is Mother's Day. I always get sad on this day. Don't know why, my Mother is still living, I have children (boy do I have children), I don't understand it, I have always been this way. It should be a great day but tomorrow will be just another day for me. But to all of the Mother's out there, Happy Mother's Day.

Now, on to The Dementia Report: Leon has been very calm this week but, also, I've noticed the blank look in his eyes has been constant. He has been very confused most of the time, needing constant reminding of events, people and places. Yesterday, everytime I went down the hallway, the light was on. It finally dawned on me that it was Leon who was turning the light on. When I asked him why he was doing this he said, "I didn't do it". We were the only ones here. Why he was doing that, I don't know. It was during the day, so no light was needed.

Yesterday while we were out, he had to use the bathroom. When he came out, he was pale and confused looking. He told me he had bled all over the bathroom floor. He asked me if I would please call the Dr on Monday. Looks like they are going to have to operate to control this bleeding. He just seemed so scared. I felt so lost when he asked me to call the Dr. Felt so, "wow, I sure wished I had someone to lean on" sort of feeling. It scares me to think I have to make Life or Death decisions for another life. What a responsibility. I hope the decisions I make are the right ones.

He seems quiet this morning. I have offered to take him to the Emergency Room, but he will not go. I am concerned about the blood loss. Will have to watch him today and, if he takes a turn for the worse, well, ya'll know where I'll be.

Until then, this beast is doing it's job. And what a fine job it is.

So, for this Mother's Day weekend, I will be taking care of my husband; a man who cannot think for himself anymore, a man who would love to take his wife out for a special dinner, but doesn't know how anymore, a man who cannot be the man he was before the Beast came to stay and, a man who within the year, will no longer be.

Week Re-cap

This past week has been exhausting. From utter sadness to complete frustration. Of course, Leon saw none of this. Even if he did, he probably forgot it the next minute or two.

The last few weeks have been the most "normal" in a long time. However, as predicted, the monster came back, this time though, was the most powerful I have ever seen it's destruction.

He has been so lost this week. One morning, while doing the breakfast dishes, the phone rang. It's in the living room. He came shuffling into the kitchen and said, (in a panic) "the phone's ringing, the phone's ringing". I told him to answer it and he said, "I don't know how, but it's ringing". Another day I must've told him at least 74 times that the 3rd of May was Tuesday. On Thursday, Jack had a Guitar Recital. Sitting in the auditorium was like bringing a 2 yr old. He was constantly moving, complaining, trying to stretch his legs, and became obsessed that Jack didn't know where we were. As soon as Jack was done, we left. He told me that he doesn't know why (?), but his legs are getting very stiff. He will not use the walker, but thinks his cane is helping him walk. Uh, no, but if I suggest using the walker, well, I'd rather eat nails. It's that bad.

Yesterday was my Marie's birthday. I made some fabulous Beef Stew, loaded with veggies, all organic everything. Marie's boy, Sean, had to go potty, but the front bathroom was occupied. So, he went to the master bathroom. Leon started to get up, upset he was using our bathroom. In front of everyone, I said, "will you please sit down. It's going to be OK. Sean is just going potty". He was so mad that little Sean Boy was using our bathroom. He just sat there and stared down the hallway. When he saw Sean come down the hallway, he went to get up to, and I know this, check to make sure he didn't destroy anything in the bathroom. That made me mad. Once again, I told him to calm down, sit down and enjoy the party. This is Marie's special day.

So, here's to you Dementia, you have done a great job in destroying my husband; totally, utterly and completely. If there ever was an award for this, I'm sure you would get a plaque that said, "Job Well Done". And I would say, "F You".