Husband's last camping trip

Husband's last camping trip

Thursday, June 30, 2011


Husband got up rather early this morning. When he does that, you can bet your breakfast it's going to be a rough day. It has already started..........

Earlier in the week, I mentioned that I would like to detail the car before our trip. Just the usual stuff, washing, dusting the inside. Husband said he would help me.

Tish came yesterday and we decided to go to the Goodwill store this morning. Husband was sitting with us when we decided on a time. Later, I told him again that I was going around 9 AM today. He gave me a blank stare and nodded.

When he got up this morning, he said, "You better get ready, let's do it before it gets too hot". "Do what?", I ask. Looks at me like I'm crazy (now that, my friends, can be discussed at a later date), and says, "DETAIL THE CAR?" "Oh, I am going to Goodwill, but if you want to do it, fine". He says, "Well, you should've told Tish that we(?) (I didn't invite him to help me with the car) had made other plans". Now, most "normal" couples could have a really huge argument over this, but, in my world now? Change the subject. It's not worth it. So, I just said, "Well, there's always tomorrow", and leave it at that. It's easier than the alternative. You're not gonna win.

I have told him many, many times that we are leaving Saturday. A few minutes ago he asks me what day are we leaving. Big sigh, "Saturday".

We have a 55 gallon fish tank. I am ging to get more fish food tomorrow. There is enough food to last until Monday, but need to get more. So, he panics and "reminds" me that "we"(?) need to go get fish food, now. Ugh.

All of these conversations have been taking place as I type this.

Being the Mother of 7 children has taught me to multi-task. I can type, make sure the dog goes outside to do her business, check on my recordings for my TV programs for the day, listen to the dog bark outside at.....nothing and solve problems that arise in the World of Dementia.

My only saving grace? I get to go to the Goodwill store. For about 2 hours. With my daughter. And a 2 yr old. Yay for me.

Wednesday, June 29, 2011

Another World

This week has been a little strange. Jack is up in Colorado with his brother, Kristen has not been home, so it's just been husband and I.

How quiet my house is. Husband slept for the better part of the morning yesterday. Got up around noon and just walked around the house. Seemed confused. Didn't say much. Patrick picked me up around 5 to go get my car from the mechanic. Had the Tune-up done for our trip to Colorado this weekend. Mechanic said the car is in good condition, just needed the tune-up. That's good news, as this car has to last me for the rest of my life. No money to buy a new one. It's a good car.

On Monday, Tish followed me to the mechanic to drop off the car. Husband stayed home. Later, Tish came back and he started rambling about us taking the car in and we could just take the bus home. What? I told him I already dropped the car off, and, that Patrick would take me to get it the next day. He just gave me a blank stare. Tish looked at him, then me, and walked away.

This disease is taking control, I see it more and more now. It was OK for a few days last week, but, once again, when he seems to stabilize, that's a warning of things to come. The deterioration of his brain is evident now.

I am so glad that Jack isn't here. It's hard on him to see his Father this way. I can see the hurt in his eyes. He is in a place where there is just calm, relaxing, everyday "normal" stuff. He needs that right now.

I,on the other hand, need my "alone" time. When husband sleeps alot during the day, I get some "alone time", but knowing that my "alone time" is not normal when your husband sleeps for the better part of the day. I often think of places I could go, for the weekend, alone, and how I would so enjoy that. All that comes to a screeching halt when I see my husband wander around the house, in a confused state of mind.

So, here's to Wednesday. Half way through the week. Saturday, we leave for Colorado. It will be a beautiful drive up there. The scenery is just breathtaking. I look forward to that.

Until then, I will take care of the here and now. I will watch husband decline more into another world. I will be strong, swallow hard when he asks me crazy questions. I will watch him as he sleeps, looking for signs of seizure activity. I will remind him about our trip Saturday. And, I will close my eyes and imagine the beautiful drive up to Colorado, with it's peaceful mountains, trees, animals and think, "aahh".

Monday, June 27, 2011

All my Children

With Tish coming from Arizona on Friday, Justin & Anne also coming in from Colorado on Friday as well, what a weekend.

Saturday, all gathered at my house for a BBQ. Anne (my daughter in law) and I went to Costco to get supplies. Now, it is very dangerous for me to go to Costco, add Anne, and you have some serious shoppers. We did some damage at Costco. When we got up to the check out, Anne said, "Oh, by the way, I'm paying for all of it". That's Anne. So, I let her pay for it.

When we first got there, she said, "We didn't get you a birthday present, so, get whatever you want here". First thing I saw was the Big Screen TV's, then computers, then looked back at Anne. She had the look of, "Wait, what I meant was..............." That made me laugh.

I got a very pretty rug and two throw pillows for my couch. Love them.

The chaos was wonderful. Laughing, talking, eating great food, crying babies, laughing babies, entertaining, all of the above.

Anne & Susie (Tyler's Fiance) took pictures of all 7 of my children. As I sat there looking at them, I thought, "Man, that's alot of people".

Everyone left around 10:30 Saturday night. It was so wonderful, I sat for the longest time and just re-lived the whole day. I was exhausted and thrilled at the same time.

Justin & Anne left yesterday, taking Jack with them. He will stay until we go up there for the 4th. Next Tuesday we come home, bringing Jack back with us. I don't know if he'll want to come home. Tish is staying until the 23rd of July.

Justin & Anne took me aside, separately and told me how awful husband looks now. I guess if you just read it in a post, you really don't realize what's happening. Then, you see it, and the reality of it all sets in. They both told me that I look tired and worn, but my attitude is good.

Once they said that, I realized I am tired and worn. But I have to keep going.

What a good weekend and visit. I am still glowing. Can't wait for the pictures!!

Ah, now on to a new week!!

Saturday, June 25, 2011

A Broken Woman

I have many cousins. One in particular, Linda, I have been close to all my life.

Linda is married with 3 children, all grown with families of their own now. Her oldest, took his own life last October. Of course I knew about it, but I could not attend his funeral as all of my relatives are still out in Southern California, and we had just gotten back from our California trip.

Because of my situation here at home, I never reached out to her. Well, I sent her an email the other day, she replied and it made me so sad. She is not doing well, he was her firstborn, they are still walking around asking, "why?" Her heartbreak was screaming out to me in that email. I feel so bad for her. He left 4 children. The two older girls still sleep with his sweatshirts, the two younger ones won't remember him.

And it got me thinking. Will I be like that once husband passes? She is a broken woman. I don't want to be a broken woman. I want to move forward in my life, and cherish what I had. It scares me. I don't want to hurt like she is hurting. Is it different when you have to bury your firstborn, regardless of his age? I think it is. Especially the way he died, by his own hand. My husband has no choice, a death sentence was given to him, he didn't ask for that.

Early, early, this morning, before the sun was even up, husband was talking to "someone". Carrying on a full conversation. Talking ever so softly, it was such a soft voice, one I had never heard before. I can't describe it. I would like to think he was talking to his Mother. I like to think she is "around" him now, I feel her presence.

When he joins her, I want to be strong. I will miss him, I will cry for him, I will tell the grandbabies about him, I will raise our son, I will grieve for him and all he went through.

I just don't want to be a Broken Woman.

Friday, June 24, 2011


When I worked, Friday was the best day. There was a light in my step, I dealt with the traffic differently, clients seemed OK on fridays', co-workers didn't annoy me as much, I seemed to get more done on Friday than any other day of the week, Monday seemed so far away.

The weekends were great. Get the house cleaned, start the laundry, get groceries, have some great dinners on Saturday night, watch movies, and, still there was Sunday to look forward to. By Sunday night, I had had enough of this staying home thing, and was ready for a new week to begin.

My Fridays' are now very different. It means the end of my daytime shows for 2 whole days, the house is clean everyday of the week, I get groceries whenever, I do laundry on Mondays' now, I cook every night, I don't watch many movies and Sunday is just another day.

Wow, what a vast change from just a year ago. When I worked, I used to think about other wives and mothers' who stayed at home, and thought, "that would be nice to be home all the time". Ha, be careful what you ask for. The grass is not always greener on the other side.

I quit work to be home with a husband who is dying. No sittin' on the couch eating Bon Bons, no casual eating out, (can't afford it), no nothing.

Instead, I have become a woman who now looks for signs of, seizures, falling, hallucinations, abnormal bleeding, having fits, dealing with a husband who acts like a 4 yr old, and dealing with my 16 yr old who is wise way beyond his years.

What happened to me? To us? It all started when I did my research on the Internet about signs and symptoms of a terrific disease and ended in a Conference Room at UNM Hospital, with a Neurologist beginning with, "I am so sorry............."

Thursday, June 23, 2011

Fresh N' Ready

I post early in the morning. All is quiet, my mind goes places not possible the rest of the day. I think about everything. The past, the present and the future. The good times, bad times, happy times, sad times. I think about my family, my husband, my kids, my mother, sisters' and brothers'. I think about what the future holds for me. I worry financially. I make decisions, some I stick to, some I don't. I picture myself alone, with all the kids out of the house and my husband gone. Can I do this? I ask myself. I don't know, I answer myself. Will I wake up each morning and feel a dread? Or will I wake up each morning and look ahead?

Kristen got another part in a movie they are filming here. She is excited as it is a speaking part. She doesn't know what part she will play, has her audition this afternoon. Guess we'll know by end of day. She makes me smile, her future so bright. I remember me at her age. I already had a few kids, my only goal at that time was getting one kid potty trained, while waiting to birth another. The future at that time in my life was non-existent. Never thought about it, was too busy.

Now, here I am, all these years later, and the future is brushing my face. Here it is, ready or not. Where will I be a year from now? I think.

Today is a new day, dawning cool and clear. Today, I say to myself, I will look ahead to whatever. I can't change the past, I can only head forward, that's life. Don't know where that'll take me.

I do know a few things: That I loved my husband; that Familial Frontal Lobe Dementia is a horrible, horrible way to go; that I love my children with all of my soul; that those grandbabies are so, so precious; that I love my mother; that I love my sisters' & brothers'; that I do have a future, one that will not be spent with my husband, but a future none the less.

Wednesday, June 22, 2011

Another really cool morning. Someone, (Jack ? Kristen ?) turned on the cooler after I went to sleep, left it on all night. Jeez, it's freezing in here. I wanted to wake them up and yell, but, decided not to. It would wake up husband, then my long day would be even longer.

I BBQ'd yesterday. Husband sat at the patio door and "instructed" me on how to BBQ. I had to clench my jaw to keep my mouth quiet. I have always been one to just tackle something, no instructions, no directions, just do it. He, on the other hand, needed to "read up" on it, study it, then do it. Anyway, the BBQ was absolutely delicious, with no leftovers. Ha!!

For two days, husband has not slept most of the day. Don't know what is up with that. There has been some stabilization, somewhat. Memory has been OK. Walking has been more and more unsteady. Insisted on getting the mail yesterday, went out in just socks to the mailbox. I told him to use the walker or at least put your shoes on, but no, went out the way he wanted to. You know that commercial that shows people who are off balance because of issues, one where it looks lke they are walking sideways? Picture that along with some spasticity in the legs and you have husband now. Pitiful.

I want to get him a better pair of shoes. Maybe that'll help? Don't know. The shoes he has are New Balance, but because of his spastic gait, he wears shoes down in no time.

I spend my days thinking of ways to help and aid in his walk. Mainly, THE WAuLKER WILL HELP YOU WALK. It's going to take a real good fall, then, and maybe then, he will start using the walker. Stubborn.

Like I said, he has been more or less OK this week. I am always waiting for the other shoe to drop though. It's coming, sneaks up on you, then, wham, kinda like pie in your face. Off we go to Never Never Land. Sometimes it's like cold reality, sometimes it's funny. Just. Never. Know. One thing's for sure, it keeps you on your toes.

Today will be a good day, I hope. I like these good days, but, it also spoils you just a little bit. Just when you think it's OK, you are suddenly slapped with a sudden dose of reality that this is real, it's really happening, he won't come out of this one kind of feeling and dread, makes you just deflate. Think, it was so nice while it lasted.

I just need to be grateful for these fleeting moments. One day, even that will be gone.

Tuesday, June 21, 2011

A bunch of nothin"

I just watched a Hot Air Balloon float by from my back patio.

Two birds were chasing each other just now.

It's a beautiful, cool morning, with just a hint of a breeze.

Tomorrow is my Birthday. Ugh. The kids love my birthday. So does my husband. I think it's because they love to see me getting old.

My oldest, Justin, is coming from Denver on Friday. Jack will be going back with them. I am excited.

We are going to Denver next weekend for the 4th. I am excited.

I want to start sewing again.

Husband had a good day yesterday.

Tyler came to visit yesterday. He spent most of the time with husband, I could hear them talking softly. The sound was soothing to me. Then, he raided my refrigerator.

Kristen's friend came by yesterday. Haven't seen her in a few years. She gave me a big hug, said she was sorry for what is happening to our family now. She's a lovely girl.

Husband stayed awake all day yesterday. That was surprising.

Marie, Burt and the babies are moving to Texas in 2 weeks. I don't want to think about that.

Tish will be coming this week. Arizona is burning up. They are on Stand-by for evacuation. Scary. At least I will get my hands on baby Alex.

I am thankful for today, this morning. I don't know what it will bring, this nice, cool morning. I never know what today will bring until husband wakes up. Then, I do a mental check to see what was lost during the night.

And we go from there.

Monday, June 20, 2011

My Other Life

Father's Day was very quiet at my house. He slept most of the day. He sleeps on an average of 18-20 hours a day now. My husband used to get by on about 4-5 hours sleep a day. He was such a hard working man. Now, he's up for 4-5 hours and sleeps the rest of the time.

My daughter in law, Christine said yesterday, "that's not normal to sleep that long". Uh, what? Then she realized what she had just said, got tears in her eyes and turned away. Of course that's not normal, but my life as I know it now is not normal. We have a new "normal". One that deals with statistics, phases, memory loss, personality change, on set of seizures, halucinations and eventual death.

I so wish I could have my other life back. One where the girls in the office and I would complain about our husbands. It was all in fun, but it was so, well, normal. One where my husband would say, "you've worked hard all day, let's go out to eat". Or, "let's go to the Jemez Mountains tomorrow". On Sunday night he would say, "Back at it tomorrow, what a great weekend". On Friday night, "yes, the weekend is here". So many things I miss about my other life.

I don't dwell on it, but, with Father's Day yesterday, it got me thinking about my other life. So much has changed.

It's all memories now, that other life. I feel like a different person, I think of that other woman, the other me. I think of how she went about life, being wife and mom. She wasn't carefree, but she had a great sense of humor, looked at things differently, maybe even took advantage that her husband would always be there.

Now that womans' life has been given a different path. I will still stand strong, I will laugh, I will still be wife and mom. Only, in a different way than I had ever imagined.

They say, "Change is good?" But not this kind of change.

Sunday, June 19, 2011

Father's Day

Happy Father's Day to all the men out there. A very special shout-out to all the military fathers who can't be home with their children because they are protecting us in various parts of the world.

My husband woke up early this morning. He has been excited for this day. Kind of like a child, anticipating being the Birthday Boy. I will make the day special for him.

Since the beginning of this year, I have thought, "What will next year this time be like?" Our Wedding Anniversay, his Birthday and now, Father's Day. I know I shouldn't, but I can't help it. Now, the 4th of July is coming up and I can't help but think of next year this time. Will he be gone? Will he still be here, but gone in his mind? No one knows. Oh, if only I could turn off this kind of thinking.

This disease is so fickle. One minute, he's fine, the next, not so fine. It keeps you on your toes, that's for sure. Can get fixated on something so small, but, in his mind, it's a big problem. There are moments that I don't know if I'm coming or going.

Take for instance, last night and this morning. His remote for his TV would not turn off the TV, only the cable box. I played with it last night, eventually turning off the TV manually. He became obsessed with this "problem", with him finally falling asleep. This morning, that's all he can talk about, his remote. Wants me to take it to the cable company, get it fixed, he says. Told him the cable office is closed today, it's Sunday. He seems quite upset about it. He focuses on the "problem", and just won't let it go. It's a remote for crying out loud, but, in his mind, it's just too much for him to bear. And, I have to live with that until tomorrow, when I can take it in to be "fixed".

So, here's to all the women out there, who have healthy husband's, who will haved a fun filled day, family time. I, on the other hand, will spend my day explaining to him (many, many times) that the cable office is closed and I cannot take his remote in to get "fixed" today.

He will have his "special" day today. He will eat one of his favorite foods, get the special treatment. He will fall asleep early, probably, and I will be left alone with my thoughts of "Where will he be next year this time?"

Saturday, June 18, 2011

Conversations with my Husband

Yesterday, I had a good conversation with my husband. Good in a way because he was fairly "with it". When I say, "with it", I mean, he was coherent enough to listen to me and stayed that way for some time. Then it was gone.

We talked about a lot of things. I told him that he needed to stop fighting this disease. It was nice, sad, teary and heartfelt. We talked about the early days of our marriage, when our Jack was born, everything. Some he remembered, some he did not. He told me that the first thing he thinks when he wakes up each morning is, "I'm going to die". So, I told him to try and think, "What can I do today to make a good memory for my family?". I know, he won't remember that, but it felt good to say it. After that, he seemed quiet, fell asleep for a few hours. Woke him up for dinner, and he started telling me how to make his hamburger. We weren't having hamburgers for dinner.

He is stumbling more and more. There have been no more falls like last week, but, he just can't seem to walk without holding on to something. The walker is against one wall in the living room, and he grabs onto the walker as he walks by. Won't use the damn thing, but it's the first thing he grabs onto as he walks by it. Stubborn. Says people will stare at him if he uses it. As if they don't stare now? I see people look at him when we're out. They glance, look away, glance back at him again, and the look they give him is pity, I see it. Then they look at me as if to say, "what's wrong with him?".

Took him grocery shopping with me yesterday. I would rather eat nails. But, he loves to go. Kept getting in front of the basket then just stopping. Loves to pick out his favorite foods. Every time I would put something in the basket, he would pick it back up, look at it, then say he liked or didn't like it. Maddening.

Tomorrow is Father's Day. I will make him a special dinner, Pat & Christine will come over, maybe Tyler & Susie, maybe Marie, Burt & the babies. I will think of my Father who passed away 26 years ago, I will call my Mother. It's not much of a celebration, but celebrate we will. For him and for us.

Thursday, June 16, 2011

An "AH HA" Moment

My rant yesterday about my husband driving and all turned out just fine. The transmission went out on his truck. Can I say YAY any louder?

Last night, as I sat watching TV, it hit me. God answered my prayers and broke the truck. Thank you, Lord.

Now, who in their right mind would sit on their couch, late at night and clap their hands and say, "yay, the truck is broken, we cannot afford to fix it, (as I'm taking my right hand with a fist, pointing it upward and whispering) "YES". Me, that's who. YES!!!!

Now, he can't sneak out and drive. Knows he doesn't dare drive my SUV, that'll get you some time in the Big House.

My husband's mind does not work and he just doesn't get it about his driving. He "thinks" he's fine, just a little stiffness in the legs is all, he tells me. Sometimes I just nod my head, it's better to do that than the only other option I have, like, "ah, no".

Ever have a 4 year old daredevil? One that says, "watch me, Mommy, I can jump real far", as you try not to swallow your tongue and before you can say, "No", off he goes and does the jump. Your next stop is the ER and you hold his good arm while they are casting the bad arm? Well, that's my husband now. It's just, well, pitiful.

Can we all say, "AH HA". Yes.

Wednesday, June 15, 2011


We are now entering a "cooling off" phase of this disease. Leon has stabilized somewhat. There has been no sudden decline, he seems to have stayed the same for the past several days. Oh, don't get me wrong, he's not normal, but there has been no changes, yet.

Yesterday, well, not good. He is insisting on driving and we had a discussion on that. Always a mistake on my part. Dr said no more driving. He says I always make it worse than what it really is when we go to the Dr. I don't know what to do. His Drivers' License expires on the 23rd of this month. Wants to renew it. Uh, no, but, hard when your husband is told that that too, is being taken away.

He is in denial about everything. Says he's fine. Anyone know how hard this is? My husband does what his father does. If you deny anything is wrong, well, it doesn't exist. Makes my head spin. His father is the same. He told my husband, "Well, I don't know what Sue is saying, you drive fine". Denial, just like he was when my mother in law got this lovely disease. Told the family, she's fine, then she dies. I remember the day she died, how the family came together and was shocked at her "sudden death". What?

When I needed my father in law to go with us to the Neurologist last year to give a family history, I called him. He said he didn't think there was anything wrong with Leon. I told him he needed to face the facts, that he has the same thing wrong with him that his mother had. He agreed to come, and as we were walking through the hospital, I looked at him watching his son walk. And I said, "Think that's normal, huh?" The look in his eyes was pitiful as he watched his son walk. But, admit it? No. They both are in denial and It. Drives. Me. Crazy.

I know his father thinks I'm the one who's crazy. You can tell by the way he looks at me. I want to shake him.

I am just at a loss today. I want to keep my husband as far away as I can from his father, but that will hurt Leon. He loves his father. I can't take that away from him, too much has been taken already. But what do I do?

It's one thing to have to watch your husband loose his ability to walk, talk and think. It's another thing to have the father of your husband convince him otherwise. He motions with his hands and says, "Oh, he's fine, he's fine".

Mi vida loca.

Tuesday, June 14, 2011

10 Things You May Not Know About Me

1. I believe in God and the Trinity.

2. I love being his wife.

3. I love my children like no other.

4. I love the thrill of taking off in an airplane.

5. I believe in Ghosts & Spirits.

6. I don't have a BFF, just "know" alot of people.

7. I have a real "Potty Mouth". When prompted, I can really blow.

8. I hate phony people. Always imagine slapping them.

9. I love staying up late, then, getting up early.

10. I am not afraid of being alone, afraid of the sadness that is to come.

So, there you have 10 things about me that make up "Me". Tomorrow, I may add 10 more.

If it's honesty you're looking for, you've come to the right Blog.

Monday, June 13, 2011

Weekend and Widow

Our weekend was OK. Had some good moments, some not so good moments. It's like that now, you know.

Jack was going to give Bessie a bath yesterday afternoon. This dog HATES water and, because she is so big, it's hard to get her in the tub. All it took was her hearing the water run and she came in the kitchen (where she is not allowed) and just looked at me like, "Noooooooooo". I couldn't help but laugh. I don't know how he got her in, but he did. Once she's in, she loves it, it's gotta feel good.

Of course, my husband, in his childlike mind, wanted to help. Jack just looked at me like, "Mom, no". We can't tell him not to help, but when he "helps", well, it's more work to have him there than if we did it alone. Bottom line, the dog got clean.

I talk to my Mother every Sunday morning. She lives in Los Angeles, where I was born and raised. My Mother is old now, and, how can I say this, well, she doesn't have all of her faculities anymore. Sad. She lives with my Sister now, can't live alone. My Sister called me last week and said that she thinks my Mother has a form of Dementia. After talking with her yesterday, I think my sister is right. The conversation we had was crazy. She really rattled me. Had to make another espresso after talking with her.

Am going to look into some sort of Support Group today, for me. I need something. There are times I feel so isolated and alone. After years of working outside the home and raising kids, being so busy all the time, the roller coaster has stopped and I am left to wonder, what now? It has been an adjustment, this staying home thing. I just wish it were under different circumstances.

All these years, my husband and I had always said that when Jack turns 18, we may travel, he said he wanted us to get a 1 bedroom house, so no kids could move back home. It was a standing joke. And we would laugh. The future looked so good. We both were looking for early retirement, begin a new chapter in our lives. The world was at our feet. The things we would plan. Oh, how we would sit up late at night, talking about what we would do once the last kid left the nest.

Of course, we all know how it really ended. No more planning a future. I have a future, but it will be by myself. I now have to make decisions I never thought possible. Never once did I ever think that instead of making plans for us to do the things we wanted with no kids, I am now being forced to plan a future without him. I am now his Power of Attorney. I get the task of keeping him alive or pulling the plug. I get the task of planning his funeral. Once all is said and done, I will be left without my husband. I heard the word Widow, and it just did not sound right. Can't you just say that my husband has passed and be done with it? Don't call me Widow. Just sounds too final.

Sunday, June 12, 2011

Working Overtime

My mind has been working overtime alot lately. I think it's because of reading all of the Clinic Notes Dr Q gave me the other day. I read each and every one of those notes. Sat down with an espresso and dug in.

Re-living everything. Remembering certain smells, people, feelings that day, what I was wearing, remembering I had to drop my husband off at home and get back to work where everyone would ask, "Well, how did it go?" How the hell do you think it went, I say to myself now. He's going to die, that's what I would think.

I think back to last August when I gave my resignation at work. I gave them 30 days notice. Needed time to find the right person to replace me. How some of the clients called me personally once they found out. Some sent cards of Sympathy, some called and cried with me over the phone. When they hired my replacement, a great gal, on her first day she asked, "Why are you leaving this great place?" I said, "Well, my husband is terminally ill and I have to care for him". She sucked in her breath and said, "Oh my God, I'm so sorry, I'll never complain about my husband again". No, honey, don't, you never know what's around the corner.

I watched a silly show the other night. A couple were getting married. When the vow part came up, something startled me. Ever think about your vows? "In sickness and in health, til Death do you part". Not one of us ever thinks about it, at least I didn't. You are looking at your partner with goo goo eyes, thinking, "yeah", no one ever thinks about the "in sickness and in health, til death do you part". Until, like me, you are actually living it.

My husband took his first real fall Friday night. His legs do not work anymore. His brain has been destroyed in his motor control area. Ever try to stand up when your foot has gone to sleep? No control, right? His toes curl in when he tries to walk. Well, the right big toe curled in, and he went face first onto the floor. I heard a funny noise, came into the living room from the kitchen, looked down the hallway, and, there he was, lying face down. My heart stopped for a moment. Ran to him, he was trying to get up, I was trying to help him, thinking the whole time, "Call 911, call 911". Once I got him up, he was dazed. He may have had a small seizure for all I know. All he could say over and over was, "I fell, I fell". Reminded me of when the kids were little and they would fall and run to me saying, "I felled, I felled". Awful.

I read alot of Blogs. Most are so entertaining, but there are a select few that make me want to comment. I don't, but often think of commenting on how trivial they sound. Like, "How do other Moms' do it with 2 kids?", or, "I would love to get out of the house and just do some "Me" time", or, "my husband has been working so much and has not helped me with anything". First of all, I did it with 7 (yes, that's right, 7) kids, I never got any "me" time, my husband was one of the hardest working men I ever knew and not once did I complain that he wasn't there to help me. There are days when I would trade places with any one of them. How I would love to have their life and their issues.

Instead, every morning when he wakes up and tries to walk to come to me, I see a crippling, hobbling, destroyed husband who can't think, can't walk, can't remember what day it is, can't write his own name, can't remember if he showered the night before, can't remember his son didn't spend the night with his friend, can't remember what he did yesterday, can't remember anything anymore and I think, "In Sickness and in Health, til Death do you Part".

Saturday, June 11, 2011

Neuroligist, check - Psychiatrist, check - Pastor? no check

I called this Church and requested a Counseling Session with this Pastor that my Brother had referred me to.

When the girl first answered, as I was talking, she cut me off and transferred me to another person named "Kathy". Kathy was not at her desk, I had to leave a message. Shoulda known better, but I did leave a message. This "Kathy" called me back and I started telling her that I was in need of counseling with their Pastor. Told her the shortened version of what I was going through and as I was telling her, she would CHUCKLE. Another shoulda known better. I told her the name of my Brother's Pastor in Florida and how he knew the Pastor there at this local church. She then proceeded to argue with me, telling me they had no such person by that name. As we proceeded on with this crazy conversation, she said, "Well, if you come for counseling, all the Pastor can do is give you Bible references, and because you are Female, (Really? Really?) another female will have to sit in with the Pastor". "Also", she said, "Pastor does not counsel anyone, he cannot charge for this, he is not trained in helping you". Ah, she didn't really say that, did she?

It's a good thing I didn't go in person to make the appointment. My gut was telling me to just hang up on this person. After about 10 minutes of giving her the name over & over of this Pastor, she kept saying that no person by that name was there, she would ask me again what his name was. Like I was going to change the name?

I told her during the conversation that between Neurologists and Psychiatrists, dealing with a terminally ill husband, financial difficulties and worrying about my future, I somehow got lost in it all and needed guidance for myself. And this woman LAUGHED OUT LOUD, OVER THE PHONE. What a silly person. I don't mean silly as in funny, goofy, I mean silly as in dumb ass.

She wanted me to call her back with the "correct" name. So, I looked at my Brother's text message, said the name over & over, (was a very easy and common name), looked at my phone and said, "naw".

Friday, June 10, 2011

Neurologist Update

Our visit with Dr Q went very well yesterday. Actually, it was so relaxing to just sit and talk with him. He has taken a special interest in Leon, and has a soft spot for my husband. His eyes show compassion.

I've mentioned before that Dr Q is leaving UNM and going to Southwest Medical Associates. Because we go to UNM for low cost medical treatment, we will no longer be able to see him. When we went to UNM for his initial visit back in January 2010, he first saw another Dr. That Dr, within the first 10 minutes of examining Leon, knew it was something beyond his expertise, he said it looked like it was a brain malfunction, that he was going to get another Dr specializing in brain disorders to examine Leon. That was when we met Dr Q.

This Dr had other patients waiting, but, spent at least an hour with us. That's when he got the ball rolling with all the tests Leon went through.

So, yesterday, as he was saying that he wanted Leon to get the best care, I mentioned that I had applied for Medicaid, was waiting to hear if we had been approved. His eyes lit up, then he said that if approved, we could follow him to his new practice. I am praying that we get approved so Leon can continue his care with Dr Q.

He gave us all his new information and also, all the clinical notes from Leon's first visit there at the Neurological Clinic. When we got home, I was reading through the notes. It took me back to the very first day, and as I read, I felt the same way as I did back then. The fear I was feeling, knowing in the pit of my stomach that he indeed had Dementia, not knowing if anyone would listen to me, ugh, it was awful.

Then, I came across The Day of Diagnosis. In short, it said, "With the changes of personality, increasing disorganization, the spastic paraperesis and the strong family history of dementing illness present in the mid-forties in this family, it is with regret that I had to inform the patient and his wife of this devasting diagnosis." Also noted was this, "I advised that the best plan was to maximize time with the family, put the family affairs in order. The patient did not want to know how much time he had left, and I assured him that this time was not certain, but that he should maximize his time with his family."

Huh. It all came back to me. That Day of Diagnosis. When reading this, I remember everything about that day. The sounds, the weather, the smell of the hospital, laughing in the hallway and the Code Blue page to the ER. And I re-lived every moment of that day.

So, onto our next adventure in the Land of Dementia. We are certainly praying that Medicaid will be approved and I will be approved as his Caregiver. I ask that you do the same, so Dr Q can follow us to the end.

Thursday, June 9, 2011

Neurologists, Psychiatrists and now, a Pastor

My dear sweet brother in Florida has given me the name of a Pastor here in Albuquerque that his Pastor knows. He has referred me to him, I will call today to set up an appointment with him. I have put me on the back burner too long. I need help too. I have been reading books my wonderful Sister sent me, and believe me, they help. I just need to find my core energy again, and I believe that with the two, I can do it.

This morning we go see Dr Quintana for the last time. He is leaving UNM, so Leon will be referred over to the Dementia Clinic with another Dr. We saw this Dr last year. He was great also. Leon does not want to go today. These appointments don't last long. We talk about everything. Dr always asks, "So, how's the memory?" Leon always says, "It's good!!!!" Then, the Dr looks over at me and I just shake my head. It's hard taking him because he is still in so much denial. On the way home he is always quiet, gets home and will sleep for hours. It exhausts him. Another thing we touch on is his "End of Life Plan". He does not like that. Imagine taking your child in for shots. The child is petrified of needles. And you have to tell them they are getting shots. The child is horrified. Well, that's what it's like taking my husband to the Neurologist.

Leon's Drivers License is expiring this month and he is obsessed with re-newing it. I have a hard time telling him that the Dr said no more driving. I don't know how I can get away with this one. Any suggestions? Ha, easier said than done.

Jack had his first session with the Psychiatrist. He liked her alot, said that he felt better now that he can talk with someone who listens and gets to the heart of it. I am so glad we found her. She has a way with children and can communicate with him. He said, "It's different with her, Mom." I'll take help anyway I can get it.

Sometimes, during the day, I feel my world spiraling out of control. I feel as if I am losing ground. I need to stay grounded. For Leon, for Jack and for myself.

Jack asked if we could move to Denver sooner than next June. Unfortunately, we cannot. There is no money to do that with. I have to plan, save and decide.

We are going to Denver to spend the 4th of July with Justin & Anne. I will take time to visit areas where we can afford to live. For that, I am looing forward to. My life as it is right now, well, there's not much to look forward to. At least the changes in our life and the decisions I am making for Jack and I get my mind off of this disease that presents itself and slaps me in the face when I wake up each morning.

Wednesday, June 8, 2011

Side Effects of Dementia

I'm not talking about Leon's side effects. We all know what is happening to him. I'm talking about what this monster is doing to Jack and myself.

I took Jack to the Dr on Monday. The things he told the Dr, how he has been feeling, his thoughts, his emotional state, broke my heart. I wanted to grab my child and run as far away as I could get us, away from the awful truth. My child is suffering beyond any scope I'd imagined.

The Dr immediately recognized his condition and said that they had a Psychiatrist on staff and would I mind if he went and got her to speak with us. After some time, he came back with her. I felt instantly calm around her. She seems to be a wonderful, understanding lady. There was compassion in her eyes. She said Jack is in need of immediate treatment, said to make an appointment for this week, said if they say there is no room for him this week, make it happen. So, luckily, there was an opening for today at 2:45.

I know I am making the right decision in him going to see her. Jack has seemed more relaxed, kind of like he's saying, "finally". I see good things happening with this counseling. I see my Jack coming back.

Jack told me things that his father has done I didn't know about. He said, "Mom, he is so bad". He also told both Dr's how bad off his dad is and how hurt he is by all of this. He also said that when he was little, he always had me, but now that he is older, he needs his dad and his dad cannot be there for him. He said he has a sore heart. My God, my child is hurting beyond measure. And all because of a disease called Familial Frontal Lobe Dementia.

I am hoping today's session will open up the door he needs. This is going to be a journey for him. A journey toward healing and looking to the future with hope.

As for me, I will be OK. In some ways, I am anxious for Leon's journey to be over. Not because I want him dead. I want it to be over for him and his suffering. Is that wrong of me? Don't judge me people, he has a TERMINAL disease, there is no cure, there is nothing that can be done for him. If there was a chance, I would move Heaven and Earth for him. I cannot. We are left with what we have. I see the suffering every day. The hallucinations, the disorientation, the lack of memory, his inability to walk. And I say to myself, "How much longer is this going to go on?"

Only God knows in His Infinite Wisdom. As I sit here typing this I feel the anger, frustration and horror of this terrible disease and what it's done to my family. The Side Effects of Dementia.

Sunday, June 5, 2011

Another Phase?

We are now moving into a phase I do not like (as if I liked any of this). Leon has continued to go downhill. It is so evident now. It has been 7 weeks, and he has not come out of it. There are moments, and, when I say moments, I mean moments, where he is "OK", but it only lasts for mere minutes, then, he goes back into his world. His memory is pitiful now. I hold my breath every morning, to see what he has lost overnight. He has been combative over the last few days, only towards me. I have had to learn to just take it and continue on with my day.

The other day he took 3 showers, forgetting he had already had his shower. Of course, I made it funny and he seemed to think it was funny too.

I had an anxiety attack on Friday. Haven't had one in years. It just hit me. I was still feeling it's effects yesterday. Can't go there, too much to do, too many people are relying on me. Need to find my inner strength again.

This phase has taken me off guard. Didn't see it coming, maybe that's why I had an anxiety attack.

Had my car serviced on Friday. It cost me $88.00 for diagnostic and oil change. Now, I have to come up with $400.00 by the end of this month for the Tune-up, fix a small oil leak and transmission flush. Uh, ok, the odds of me coming up with that kind of money by the end of this month (have to have it done in order to go to Denver) are very slim. Guess I need to buy a lottery ticket. Story of my life: just when I think I'm gonna catch a break, reality slams me in the face.

My daughter in law and I were talking yesterday. She said, "You know, Sue, you can call me anytime you are having a bad day." To make a point, I said, "Christine, every day is a bad day for me."

On to the next chapter.

Friday, June 3, 2011

Breathe in, breathe out

My appointment with Medicaid went pretty well. This mysterious guy sent a replacement, a young lady, to meet with me. Funny how things turn out. She shared with me that her Father lost one leg to a work related accident 2 1/2 years ago and she helped him with his filing for Disability, Medicaid and Medicare. She told me that I should file for Family Medicaid, as our chances of the whole family getting approved were better than just one member of the family. She also informed me that I could apply for "Extra Help" from Medicare. She said we qualified for that as well. She explained that if Medicaid didn't cover Leon's medical expenses, Medicare would pick up the slack and we would have no out of pocket medical expenses.

Now, we play the waiting game. I am glad she was the one doing the initial application. She understands the wole process after having gone through this with her parents. She also stated that if approved, I could apply as a "Caregiver" to Leon, and, that they would pay me to care for him. That's a wild card, as I have learned that the state has no money to pay for a Caregiver, but, I will apply and see what happens.

I guess God knew that I needed a special person to understand what I am going through and sent her. I am thankful.

On the home front, had a bad day with Leon yesterday. He seemed very restless, but, did sleep for the better of the afternoon. After we had an early dinner, he seemed somewhat calmer. He was still restless, like he was wanting to argue, but I kept my distance and eventually he went to sleep.

Today, I take the car in for an oil change and see if the car needs a tune-up. If that's the case, there is no money for a tune-up. But, I will once again trust that the expense will not be greater for what I have set aside. My car runs fabulous, smooth riding, but because this car has to last me for the rest of my life, I have to keep up with maintenance. Please pray with me that the maintenance will not be a great expense, and I will be able to handle it.

We are going to Denver for the 4th of July weekend. My son, Justin and his wife are there now, as well as 2 neices. It will be a chance to look around and see what would be available when we move there. My one neice, Trisha, is so excited and said she could advise me as to where I could get the best for my buck. Am looking forward to that. Justin has offered to help pay for my gas to go there, will take him up on the offer.

So, that is where I am at today. Don't know what tomorrow will bring, just know that whatever it is, I will have to get through it. One foot in front of the other.

Wednesday, June 1, 2011

New Day

Today is a new day. I got up and decided today is a start to my new future life. I will have 11 months to make a move. 11 months to plan and save. This move will not come cheap. I don't know how I'll do it, but, I'm not going to focus on how, I'm going to focus on the when. I get excited when I think about it. Excited about a new beginning. Excited for Jack, he'll have more of an opportunity to further his schooling. We now talk about it every day. There is a spark in his eyes, one that I haven't seen in a long time. I feel good about this. I feel settled about this. It just may be OK after all.

Of course leaving here means I will be leaving without Leon, that is, if he passes before we leave. Jack and I have decided that even if he is still here, we are going. We will just take him with us. He may not know what's going on, but he'll have us. If he is not, then his final resting place will be here. I can't think that we are leaving him behind, his spirit will be with us, always.

I went to Medicaid yesterday. Was given the correct form I've needed, but was never provided. The lady was very nice, said to fill out and return, then I would get an appointment anywhere from 10-15 days. Because I have this appointment tomorrow, with the mysterious guy who never showed up last week, she said go to the appointment, with the proper form. Here's to hoping that all goes well tomorrow and he'll be approved for Medicaid.

If not, then my reasons for leaving the Land of Enchantment will only further my plans for saying "Hasta, New Mexico". For Jack and for me.