Husband's last camping trip

Husband's last camping trip

Friday, March 30, 2012

Ride the wild surf

So, life continues on. I get up each morning, preparing for the day. I have hope each day that husband will have a good day. I wonder what he lost during the night. Some days are good, some, not so good.

We have had a few good days. Of course, husband is fading, but, he has been in good spirits the last few days.

I had to go grocery shopping yesterday. Husband was asleep. As I looked at him, I felt the need to wake him and take him with me. I did. He was a little confused when I told him I had to go to the bank, gas station, then on to the store. You cannot tell an Alzheimer's/Dementia patient a list of things you are going to do. I keep forgetting that one. You have to tell them one thing at a time. He was easy going about it, just kept asking when we were going to go to the store.

He did fine in the store. I explained to him that we could not buy any extras, that I had to buy the necessities. There were no throwing fits, no wandering off, nothing. He stayed by my side, asked me a few hundred questions, and was even joking with me.

As we were leaving the parking lot, he said, "I kept up with you real good, huh?" I complimented him on his ability to keep up with me in the walker. It was nice, yesterday afternoon.

In these Alzheimer's/Dementia patients, their eyes do something weird. They seem to take on a life of their own. It's hard to explain it, it's like their eyes get bigger, rounder in a strange sort of way. But the eyes themselves are blank. Total blank. I don't like looking at his eyes.

There have been a lot of tremors during the day. I've noticed this week, he has tremors in his arms all day long now. He also shakes involuntarily, all day. When he goes to lift his glass of water, he will spill sometimes because of these tremors. When I see him having tremors, I turn my head. I don't like looking at that.

There are a lot of things I don't like nowadays.

All in all, since Dr A called last week, it has been OK. All I can do is keep doing what I'm doing. There is no guideline for my days. There is no schedule. I deal with whatever comes up during the day. I am no longer in charge of anything. This disease has taken over our very lives. All I can do is ride it out.

And, ride it out I will.

Thursday, March 29, 2012

Offerings of help

Why do I blog? Why do I put myself out there? How can I come here each day and open my heart and soul to cyberspace?

Why? I'll tell you. It's to tell a story. It's a story of a man who had it all. A loving family, well respected in the community, strong and giving. It's also about a man who has been struck down in the prime of his life with this deadly disease.

I first suspected husband had been afflicted in 2005. I didn't say anything, just, wondered. It was ever so slightly, but, it was there. It gradually became more apparent with; the confusion (at sudden moments), a change in his personality, (slight), a sudden limp in the left leg, forgetting where the light switches were, forgetting where silverware or dishes were, or, needing directions to a certain place he had been to hundred of times.

By 2008, I was convinced he had it, but, did not know where to turn. So, I started my research on the internet. I found my answers. I knew he had it. Only, I did not know where to take him.

I started with our primary doctor. Now, husband has never gone to Dr's. Never needed to. Once our primary watched him walk, he immediately referred him over to Neurology. And we all know how that turned out.

There were times I wondered if I was crazy or imagining all of the symptoms. I questioned every move I made. I thought I would go nuts at times.

Now, today, I look back at my decisions and know I did the right thing. Even though the outcome is as I suspected and will leave me a widow, I did the right thing. And for what? What did I gain? He's going to die.

My fears have been confirmed, my questions have been answered. I can only go forward with the knowledge that I have now. I know what to expect, I know what to do. It's not easy.

Let's get this knowledge out there. If you know of anyone who maybe suffering with symptoms I just described, please, get a diagnosis. It may be nothing or it may be something. You just never know. Educate yourself beforehand. Arm yourself with knowledge when you see the specialists. Push for testing. Make them listen to you.

Never going through this before, I was armed when we saw the first Neurologist. I told them, day one, what he had. I was proven right.

So, I need your help. Please, if you know of anyone who is going through what I went through, or, anyone who is suffering the first effects of this terrible disease, let me help. It's a very lonely feeling when you know, but you don't know.

God has directed me to help. I feel God has led me to this point. I had to go through this in order to help and guide others.

I'm here.

Wednesday, March 28, 2012


Rough night. Husband was very restless throughout the night. Had an accident in the middle of the night on the way to the bathroom. I cleaned it up. He was upset he had an accident. I reassured him it was OK, calm down, then went back to bed. A lot of jerking and coughing/choking the rest of the night. A little tired this morning.

I got the results of the Genetic Test in the mail yesterday. On one paper, Dr A put a sticky and wrote, "Mrs Lucero: I hope all of this information is not too much for you." Can I say I really love this guy? It's taken me some time to warm up to him, but, he is a really wonderful Dr. I am glad husband is in his care.

On the first page of the results, it has husband's name, Dr, DOB, reason for testing, and the date. In the middle of the page it has Result: and in big black bold, capitalized letters it says POSITIVE.

It is so big and bold, I thought it was going to slap me in the face. POSITIVE. Then, it went on to say that "patient has tested positive for the mutant gene causing Early Onset Familial Alzheimers Disease."

I will now meet with the aunts and cousins this weekend, the ones who are at risk. It will be up to them to get tested. At least we now have positive proof that this deadly disease does run in the family, but, it will be up to them to test or not to test. Their choice.

Today is our Wedding Anniversary. It will be spent quietly, at home.

Too many memories today. Too much.

Tuesday, March 27, 2012


So, life continues on. I took a few days off from posting to gather my thoughts. Things are the same, yet, different now. We now have the real answer, but, we (the Dr's & I) have always known the answer. It's now been confirmed by the Diagnostic Testing Center in Michigan. I have been somewhat overwhelmed by it all. I just needed time.

Sunday, at church, as we were standing and singing, it finally hit me. I glanced at husband. He had "the look", just staring ahead, not singing, nothing, that blank, haunting look. I put my arm around him and held him tight. "Oh, Lord, no, please," I silently said. Somehow, he knew why I did it, he looked at me and nodded his head.

Father in law called, wants to pick him up and spend the day with him. Husband is excited to spend the day with his dad. He's (father in law) making an effort. My heart hurts for him as well now. We are all hurting.

Since Friday, our whole family has been subdued. We are quieter, walk more softly, speak softer to one another and am more aware of one another.

Why am I feeling this way now, when, 2 years ago we did get a diagnosis? And even before that, I knew. Deep down, I knew. Probably because it's official now.

Spring is here. Winter is behind us. We are having beautiful weather. The trees are turning green, flowers are beginning to bloom. I can have doors and windows open. I am not dressing in layers. I see people walking their dogs more and more. The heater rarely comes on.

Yes, Spring. Renewal. New life. And now, this.

Saturday, March 24, 2012

Happy birthday??

Dr A called me yesterday afternoon. The news is not good as expected. Husband has in fact inherited what his mother had. Of course, we knew, but, to have it confirmed by Genetics Testing, was, well, sad.

Dr A explained how they can tell, these experts. It's really rather interesting how they go about it. Test results show the defective gene is present at conception. What makes his type of disease so interesting is, this defective gene lies dormant for about 35 years. And like an alarm, at or around age 35, this gene, or dominant chromosome, will start to mutate, causing a deadly consequence. It also showed that husband received this defective gene from the female contributor.

He also explained that what husband has is so rare, not much has been done in studies. I swallowed hard and asked, how long? He hesitated, then said, "With what we know, and how he is now, I'd say 1 more year, tops."

We talked for a good 30 minutes, he told me it was time to put him in a wheelchair, the evidence of falling is too great at this stage. He was pleased that he is using the shower seat. He also explained that I will have to look into getting him into a hospital bed.

Being concerned about all the seizure activity, he has requested an EEG, in May.

I then had to call Father in law. I felt so bad for him. He cried, I cried. He was in denial for so long, it was so hard on him. I really felt bad for him. He thanked me for taking such good care of husband, his son, his little boy. I can imagine how he has felt, yet at times, would make me so crazy by his denial, yet, here I was, telling him his only child will in fact, die, soon.

Dr A is sending me the results, I told father in law that I need to see the family, giving them copies of the test results. They all have a right to know what can happen to them, or their children. He agreed.

Husband will be 47 in May. Family members afflicted with this disease did not live to see their 48th birthday. We are now upon the dreaded 47th year. This birthday will be bittersweet. And, his last.

Friday, March 23, 2012


I can honestly say that yesterday was better than the day before. Husband woke up in a good mood, showered, and, he used the bath seat. Yes, I know, he actually used something that will keep him safe. Said he liked it even!! I was shocked. He never, and I mean, never, does anything I suggest. Fights me on everything. I don't know if this "mood" will change for the worse, but, I'll take it when I can get it.

I had to go to the store when Jack got home, so, I took husband with me. He was OK in the store, but, wanted to get something that I couldn't afford. Told him I had X amount of dollars, he already had some at home, so, use it till it was gone. He started to pout in line, I got close to him and said, "Do not act up in the store. You are not getting anymore of that stuff until you use up what we have at home. Do you understand? Now, if you can't straighten up, you will not go with me anymore to the store." A lady in front of me turned around, and I know she thought I was talking to a child, so, when she saw that I was with another adult, the look on her face was priceless. I almost burst out laughing, but, smiled ever so sweetly at her and she turned back around. As she was leaving with her groceries, she glanced back at us, saw husband and his walker, and suddenly, it made sense to her. She gave me an understanding look and left.

Husband was quiet on the way home. I had made my point. I have to go to the post office today, husband said he wanted to go too. Told him he would have to behave and I would take him.

Husband wants to go to the Jemez Mountains. I would love to take him as well. It's beautiful up there. Because the weather is going to be rather nice, I may take him next week. They have been blasted with snow from our recent storms last week, hopefully, I will be able to take him. I could use a change of scenery myself.

Here's to another week down. And, I did not hear from Dr A and the genetic testing. Always next week, I guess.

These days all blend into another. Some days are good. Some days are bad. And we owe it all to this monster that has invaded our lives, destroying all in it's path. Kudos to you, you horrifying monster.

Thursday, March 22, 2012

Mommy's Day Out

I got an afternoon off yesterday!! Tish picked me up and we went to an Asian food store, looked around, then went to one of her good friend's house to visit. While there, Tammy (her friend) and Tammy's mom offered me a very nice bath seat for husband to use. Funny, I have been thinking of getting one for him, can cross that off my list. They also told me where I could go to get him a wheelchair.

I felt so refreshed when I got home. Relaxed. Made a nice dinner, sailed through cleaning up kitchen after dinner. Whew, did not realize how much I needed that.

Husband is not doing well. He is confused and angry again. All directed at me. Another symptom is this unrelenting selfishness. It's a constant, daily thorn in my side. I honestly think that is what bothers me the most. Everything is about him. No one else matters to him. I read not too long ago about this symptom, thought, yeah, that's him, but, it is getting worse.

He too needs a day out, but, I have been letting Jack take the car to school each day, so, we stay home. Next week I am planning on keeping the car, taking him somewhere, anywhere. If we go to his Dad's house, all we will do is sit and listen to his Dad talk, talk and more talk. I want to take him somewhere where there is action, kind of get his mind busy. Am thinking long and hard about this one. He sure needs some sort of stimulation.

Tish, Jace and the kids leave today. Heading back to Arizona. I don't realize how much I miss her until she leaves again. We had such a lovely afternoon yesterday. Just the two of us. She said she was sad to go, leaving me and what I deal with on a daily basis. She told me that her heart hurts knowing what we are going through. What a good girl I have. Such love and compassion in her.

Jack has left for school, husband is still asleep, Kristen is at work. Just me and the dogs right now. I don't know how husband will be when he wakes up. He certainly was not good when he fell asleep last night. He also had a rough night of sleeping. Seizure activity has resumed at night.

It makes me nervous when husband sleeps all day. It also makes me nervous when he is awake and agitated.

Guess I have to pick my poison, yes?

Wednesday, March 21, 2012

The circle of life

I realized something yesterday. In 6 months, my youngest child, my baby, Jack, will be leaving the nest for the Air Force. He will be starting a new life. His life, his future. Where did the time go? How did he get so grown?

Because I am the mother of 7 children, my life has been filled with diapers, schedules, feedings, sleepless nights, cleaning up messes, wiping snotty noses, singing softly to a feverish child, attending school functions, with a baby or two on my lap, driving in traffic with screaming babies, endless laundry and, dreaming of the day when they would grow up. Somehow, someway, they all grew up. Now, they are well functioning young adults. They all are responsible, respectful, career driven, self supporting people. And, I am their Mother. Surprise. We made it. There were times that I even wondered if we'd make it.

To look at my children today makes me proud that I am their Mother.

And now? Now the time has come for the youngest to go out on his own. I don't know how I will handle it in 6 months. I have NEVER lived alone. Never. I have always had a child or two (or three, or four or five.......) that have been dependent on me. I was always MOMMY. What will I become now?

In the near future, I will become a MOMMY again. Only this time, it will be to my husband. He will depend on me for everything. I will change diapers, schedule feedings, wipe his snotty nose, have sleepless nights and wonder if it will ever end.

Only this "end" will not be one of pride and happiness. It will be one of sorrow and heartache. All the "good" I do for husband now and in the near future will be for nothing. Instead of preparing him for life, I am only making what time he has left, comfortable.

I am a strong woman, I know that now. To raise 7 children in at times, difficult circumstances was hard. We have gone through a lot, those kids and I. But, to do this? To have to be "Mommy" to your husband? I often wonder if I can. Can I? Am I really that strong? Will I care for him the way he deserves to be cared for? Has God been preparing me all these years for what is to come?

I have no answers today. I only know that in 6 months, my child, my last child, will venture out into the world to begin his future. And I will prepare his father for his final journey.

And the circle of life continues.

Tuesday, March 20, 2012

Conversations with no one

Not much happening here. Jack is back in school, had spring break last week. I let him take the car yesterday and today, so, we are home bound again today. Doesn't bother me. It is frigid cold here with high winds. May keep the car tomorrow and take husband out for awhile.

Father in law called yesterday morning. Said he was going to come and visit, but, it was just too cold to come out. Said I understood, then, he asked if husband had a good weekend. He sure did, I said. He seemed sincere, but, it's just words. I'd like to see more action on his part. Told him so in so many words. I get that he is in denial, but, explain that to husband.

Husband has seemed somewhat depressed for the last couple of days. I see the fight draining out of him. His eyes no longer sparkle, he has no desire to do anything but lay on the bed and stare at the TV. I try to joke with him, he will, at times, chuckle, but, nothing else. His legs are very bad now. So stiff. The stiffness has been rapid this winter. I watched him try to walk yesterday without the walker, just to put his glass in the kitchen, and, he just couldn't do it. I got the glass from him and took it myself.

Could that be what's making him so depressed? He knows his legs don't work anymore? He cannot walk anymore? I really need to get him out of the house. Do something he enjoys doing.

Before he gets up in the morning, I think of ways to make him happy for the day. Some ideas work, others don't. Depends on how he is feeling that day.

I'd like to feel happy again also. My days are busy, what with the house, meals, laundry, caring for husband. At the end of the day, I am tired, but, not physical tired. It's all mental for me.

I am hoping and praying for results this week on the genetics testing. I have a feeling we will get the results this week. Been long enough.

Husband is still asleep, but, I just heard him talking. He does that a lot lately. Talks one. Have to go check on him. It's a scary thing when you hear your husband talking to no one. We have no control over this monster. It does what it wants. Oh, how I wish I could make it go away. All of it.

Sunday, March 18, 2012

Friends & Family

We had a nice St Patrick's dinner at Jane's. Not too noisy for husband. He was a little confused at first, but, once he saw Carlos, his old buddy, he was fine. Carlos took husband under his wing, and they sat & talked for a long time. When we got ready to leave, Carlos had tears in his eyes as he said, "Take care of him." He was deeply moved by what husband has become. His face looked so sad.

Jace, Patrick and husband left early this morning for Ramah. Husband was excited. He has been looking forward to this trip. Just the guys. Of course, I gave them instructions on how to care for husband if they walk anywhere, don't let him get lost. Also, could not take the walker, he is using his cane. Told them to steady him. I know they will take care of him. They love him. It's just that he is in my care constantly, I know what to do. Like entrusting your child to someone.

Everyone is coming here for dinner tonight. I love to cook for my family. Jace ordered Pineapple Upside Down cake, (I make it from scratch), Leia wants my apple pie (also from scratch) and Tish wants my macaroni salad. Looks like I will be busy while the guys are out today!! Love to cook and see my family enjoy it.

Father in law may come to visit tomorrow. I called him Friday morning, wanting to bring husband over for a visit. He hesitated, I asked him if there was a problem. He said no, but, I could tell there was something. So, I dropped it. He seems to still be in denial that there is anything wrong with husband, other than "a little problem walking". That man makes me want to spit nails. When is he going to admit it? I cannot get through to him. Father in law at times, is more difficult to deal with than husband. When he asked how husband was doing, I told him all the issues at hand. He was silent for a moment, then said, sarcastically, "Well, you better start saving for a funeral." I wanted to choke that man. There are times I don't even want to let him know how husband is doing, he only wants to argue with me on this delicate subject. I am letting it go for now, but, when the Genetics Test comes back, well, we'll talk. He can argue with me all he wants, but, try to argue with scientific evidence?

It has been a decent weekend so far. Husband was irritated with me yesterday. Seemed wound up for some reason. Usually when this happens, there will be a sudden decline. Have to wait and see.

That's all I do anymore. Waiting for the other shoe to drop. I eat, breathe and sleep this new found way of life. Never know what's around the corner. All you can do is watch and listen. Like a thief, waiting to steal from you. And this disease has stolen. Everything we had or knew. All taken away. Leaving in it's path, a broken man and family.

Friday, March 16, 2012

The "Old Gang"

Got a call from a very old and dear friend, inviting us to her house for dinner Saturday night, St Patrick's Day. Several of our old friends will be there. None of them has seen husband in as many years. I told husband about it, he said he wanted to go. Of course I said we'd go. Was thoughtful of Jane to include us. She said it would be good for husband to see the "old gang". I am looking forward to going.

Later in the evening last night, husband asked me who would be there. I told him. He looked straight at me and said, "I don't remember these people. Who are they again?" Ugh.

Because Jace had to work and Leia had school, Tish came earlier this week. Jace & Leia got here last night. They own several acres up in Ramah, southwest of here. Jace wants to go check on the property Sunday. They invited husband to go with them. Husband loves it up there. It is beautiful. I asked him if he would like to go. Of course he said yes. I told him several times that they were going on Sunday. Later last night, he started to panic. I asked him what was wrong, he said he forgot what time they were leaving in the morning. I asked him where? Go where? He had a hard time talking, mumbling on words, finally, it came to him, he said, "The property". Once again, I told him it was on Sunday, today (yesterday) was only Thursday. I had to show him on my fingers how many more days until he goes to the property. That seemed to satisfy him, for the time being.

He forgot how to put a belt on again yesterday. Kristen helped him. She is so tender with him. Talks to him softly. Has patience with him. When she was done, she patted him on the back and said, "Good job, Daddy." He just smiled back at her.

So, husband has 2 outings planned this weekend. Seeing the "old gang" and going to Ramah. Good for him to get out. We don't do much anymore, as he tires easily, plus, his walking issues and fading memory are difficult to deal with. I keep him home, safer and easier that way.

I woke up sad today. Not a "feel sorry for me" kind of sad. Just , well, sad. Thought of the "old gang", what will they say when they see husband? What will they think? They know of his disease, but, except for 1 person, have not seen him, so, it will be a shock to them. They all knew him as this big, strong, life of the party person. Not anymore, folks. That's all gone. I asked Jane to let everyone know ahead of time what to expect.

Yes, it will be nice, this dinner. Nice for me to have intelligent conversations. I know it will all be centered on husband, the why's and how's, and how long? How long, you ask? Not long enough, I'll say.

Thursday, March 15, 2012


The unthinkable happened yesterday. My husband did not recognize me. We all laughed about it at the time, but, deep down inside of me, I shuddered.

Tish was over. We were all sitting on the couch, visiting. Husband came into the living room, looked straight at me and said, "Where's my wife?" I looked up at him and said, "I am your wife." It took him a moment, then he said, "Oh, there you are."

What a scary feeling. Is this a preview of things to come? Is he really not going to know who I am? The thought haunted me the rest of the day.

Husband has seemed to soften his anger. Replaced is this utter, complete, "can't remember anything" mood. Some days are better than others. Or, shall I say, some minutes are better than others. One moment, he's "with it", the next moment, he will go off the deep end. The hardest part is, he doesn't even remember he's been "with it", or "not with it". Does that make sense? Nothing with this disease makes sense. It's one surprise after another.

The other day, he forgot how to put a belt on. Yesterday, he put his belt on. It's this constant in and out that will drive me nuts. One day, he's got it, the next, it's gone. The next day, he's got it, and so on.

Jack seems to take it all in stride, but, I wonder how he feels when he closes his eyes at night. Does he worry? Does he long for the dad he once knew? Is he thinking about his chances of him being affected with it as well?

I ask him, he says no, but, I wonder.

Spring is coming. Along with spring is our wedding anniversary at the end of this month. So many years. Of course, we will not celebrate it anymore. Just another day. I will remind him what day it is, he will not retain it anyways. So, I will remember for the two of us. The day we got married. The weather, the funny things that happened, the people, the "looking forward to a long and happy life together."

Well, we all know now that that "long and happy life together" has come to an end. There is no future left for us. This is our future.

Wednesday, March 14, 2012

Fly me to the moon

Not much to report. Had a good day yesterday. Tish & baby Alex spent the day with us. The airlines sent Alex's car seat to Los Angeles, so I had to take her to pick it up at the airport once it arrived here. As I watched planes land & take off, the urge to fly somewhere overwhelmed me. Anywhere. How nice it would be to get on a plane and fly into the wild blue yonder. Relax. Forget about diseases. Sleep uninterrupted. No repeating myself over & over. Quiet. Oh well, at least I got to escape in my own head, for a few minutes.

Husband enjoyed visiting with Tish, and, we were all entertained by Alex. What a character. Love that boy!

Husband can no longer pronounce some words, so, he had a hard time communicating to Tish. She just goes along with it, never showing she doesn't understand him anymore. Actually, all the kids never show him they don't understand him anymore. I understand him, but, I'm with him all the time. He was trying to tell Tish about homeless people, but could not say homeless. It was pititful. She took it all in stride.

Tremors abound, daily, during all waking hours. Seizures have not been bad at night for at least 5 nights now. Choking continues in his sleep. In fact, that's what kept me up last night. I got him some big pillows, to keep his head higher, but, he slips down flat.

Still no word from Dr on the genetics testing. I have not called about home help yet. Will wait until after spring break, things calm down here a bit, then, check into it.

I have adult diapers for husband now. They are put up in my closet. Will wait for the next accident and introduce them to him. No use in bringing them out now, when there have been no accidents. May suggest he use them when we go somewhere, just in an offhand manner. Like, it's an everyday thing.

More visiting today with Tish and Marie & Burt move into their new apartment today. Am happy for them. Burt got his old job back and Marie is actively looking.

I'm not sad today. I just realized that. Yay for me. Don't have too many of those feelings, so, bear with me, OK?

Tuesday, March 13, 2012

A lot of "feel sorry for me"

Still no news from the Dr on the Genetics Testing. Every time the phone rings, I look at the caller ID, hoping to see University Hospital. I surely hope I get "the call" this week. They weren't kidding when they said 6-8 weeks.

Husband continues to decline. Husband continues to be angry. Husband continues to leave his walker all over the house.

Tish and baby Alex flew in last night for the week. I have told husband many times what day they would be here. Many times. I have also told him how they were getting here. That too, many times. Patrick & Christine picked them up at the airport last night. She called, all was well. Flight was good, said Alex entertained every one on the plane. Told husband they had arrived, he said, "How was their drive up?" Sigh, exhausting.

I noticed yesterday the tremors are mostly constant throughout the day now. Legs and arms. It's not a pretty sight.

When husband got dressed yesterday morning, he came out holding his belt. He looked at me and said, "I forgot how to put a belt on, can you help me?" I made a joke out of it. The lump in my throat was not funny.

So many things on my mind. I am exhausted from this move. Still trying to recover. Man that was hard to do without husband. I woke up sad today. He has been so nasty to me. I don't like being around him. I am committed to him. I want my life to be "normal" again. I want to feel good again.

Nothing will ever be the same in my life again. What we had is gone. The life I knew is gone. This new life is not comfortable for me. The husband I had was a strong man. The husband I have now is pitiful.

All because of this terrible, and at times, horrifying disease. And for what? Who gains in the end?

Sunday, March 11, 2012

Chicken, again?

Not a whole lot going on. Husband has been OK. A lot of memory issues. Legs have become very stiff. Have not noticed any increase of seizure activity. Of course, he has slept a lot this past week, but as far as nighttime goes, the seizures have not been that bad.

Marie, Burt & the kids came home from Texas a few weeks ago. Nice to have them back. Marie took husband yesterday for about 5 hours. She said he did good. He loved getting out. I took care of the kids and cleaned house. Was a nice reprieve for me. He came home in good spirits, but, as the evening wore on, he became a little angry towards me. He did complain about dinner. Told Marie I cook chicken every night (those Dementia patients). He was sick of chicken. Marie played along with it. She knows what to do. He ate a full plate of (what else?) chicken, roasted potatoes and carrots. Said it was delicious. Kudos to the Chicken!!

I am going to call Dr A's office tomorrow and see about getting Home Help. See what they actually do. He will resist any help when it comes to bathing or going to the bathroom. Maybe they can just sit with him so I can get out and get some fresh air? Anyway, am going to check into that.

This leaving his walker all over the house is beginning to get on my nerves. Last night, I went into the kitchen, turned on the light, and there it was in all it's glory, in the middle of the kitchen. I took it to him in the bedroom. I told him to stop leaving his walker all over the house. He looked at me, blank stare, then said, rather sarcastically, "Yes Ma'am". Then, to my amazement, he said, "You know, it's not like I forget it or anything, you just make a big deal about everything." I laughed, he smiled, then, it was over with.

Pat & Christine took Jack with them earlier in the day. When they brought him home, husband came out with his walker. He looked at me and said, "See? I have the walker." Turning to Pat & Christine, he said, "Your mom says I always forget the walker, but see, I have it." What? No use in explaining that's not what I meant. He does not comprehend anymore.

I can deal with memory loss, difficulty with walking, but, it's the anger I'm having difficulty with. I have to learn to let it "roll off my back", but, I'll admit, I'm finding it hard to deal with. He will lash out at me and say things that are so hurtful. No use in lashing back at him. He doesn't even know what he's doing. It's hard. Am working on it.

He has been wanting to see his dad, but, his dad has been sick. Would like to take him to his dad's house today, maybe that will help calm his nerves. Even with the mood stabilizer he takes, it does not curb his anger. All directed at me. I know it's the disease, still, it's hard to take. Something I need to work on.

I hope for a good day, today. Would like to relax, maybe enjoy a good old movie. Relax. With husband at his dad's, that may just happen!!!

Friday, March 9, 2012

More "Perks"

Around 5:30 this morning, husband woke me up by clapping. He was laying flat on his back and clapping away. Then, he called the dogs to get on the bed with him. I sat up, told him to hush, as the dogs were trying to get on my bed!! Once they saw me, they backed off. I got up, husband was laying there wide awake, quiet by then. He looked strange to me.

What was that all about?

Nights are scary for me, for husband. He always seems more confused by nighttime. I've read about Sundowners Dementia, which I know he doesn't have as he is confused all day too. Because he sleeps a lot during the day, I don't notice it as much. By afternoon, he comes around, is more awake, so of course I will see the mass confusion that is going on with him now. On the days when he is more awake, I will hear him holler from the bedroom, or, he will come out and when I ask what he wants, he will say I told him it was time for dinner. He is adamant that I called him for dinner. It will be 2 in the afternoon, but, he will insist it's dinner time.

Another one of the "perks" of having a spouse with Dementia.

I got some Adult Diapers for him yesterday. Don't know when I'm going to introduce them to him, but, they are here. I may offer him one if we go somewhere for any length of time. I know he will fight me on it, but, the time is now for him to start using them. He has accidents all the time now. At least he still has the sense the change when he does have an accident.

He knows he's going downhill fast now. I can see it in his face. He looks like a defeated man, one who has lost the fight. It's gone out of him. Like a deflated balloon. I've noticed that since last week.

I live and breathe "signs and symptoms". I wake up with it, go to bed with it. During the day, I try to think of other things, however, this monster has taken over my very life. He's not the only one affected. I am too. Only, I will live and he will not.

I have decided to NOT seek employment. I cannot and will not leave him alone. Too risky. Money is tight, but, not worth putting husband at risk.

I don't know what today holds. I never know. Patrick is off today. Maybe he will come take husband out for a few hours? That would be nice. Only, when he takes husband, I always give instructions to Patrick, as if he were a child of mine.

In a gut wrenching, heartbreaking and sad way, he is.

Wednesday, March 7, 2012

The long and winding road

Just about settled in. All that's left are the hanging of the pictures, wind chimes and solar lights.

Can I tell you how much I love my new kitchen? So much more space. It's just so much more than the old house. And, believe it or not, the rent is cheaper here. Can we all say, yay?

Husband was in and out yesterday. He would sleep, wake, walk around, sleep, wake, walk around. If I compare him to say, last month, there has been a great changed in him. The memory issues are far greater than before. He doesn't seem to retain anything anymore. I hate looking at his eyes. They are void of life, dark and haunting. Blank. It's hard looking at those once full of life eyes.

When husband was using only the cane to walk, he would leave it in one room, forget where he left it and the hunt would be on. We have a new issue now. He leaves the walker all over the house. Several times yesterday, I would go into the kitchen, living room or hallway to find the walker. I would take it to him in the bedroom, tell him he left it in the kitchen, he would look at me with that blank stare, saying nothing. Told him he needs this to help him walk, please don't leave it, use it. No response. Nothing.

Sometimes, he will come into the living room, holding onto the walls for dear life. I will ask him where the walker is. He looks at me as if he does not know what I am talking about. It will take some time, but, it seems to finally register with him, I will go get the walker for him, and he will use it.

I woke up this morning to find husband having a slight seizure. If you have ever watched someone vibrate, well, it's not pretty. There have been, at times, moaning associated with the seizures. This started a few days ago. Is he having pain? I don't know. When a seizure comes on, I immediately want to reach for the phone to call 911. Then, it subsides.

I wish we could see Dr A more often. However, with this type of disease, obviously there is no cure, so, it would not be beneficial to see the Dr more than every 3-6 months. All Dr A does is prescribe drugs that help control the seizures. That's all anyone can do. That's the hard part. Nothing can be done about it. Nothing.

I think I will take him to his dad's today. Give me a break, let him see his dad. It's hard for his dad to see him as well. I'm sure he has a hard time watching his only child go through what his wife went through. He's still having a hard time accepting it. He's still in denial.

So, this disease is making it's way through husband's body and mind. It's virtually moving through as expected. 2 years ago, I read what they go through. OK, fine and dandy. One day, I thought back then, he too will go through this or that. That one day has come to live in my house. All those symptoms I read about, is now here and present. It has done a fine job destroying a once big, healthy, strong, full of life man.

There are times I wish it were over with, for him. The man I knew is gone anyway. I don't wish him dead, I wish it were just over. Is that wrong? I don't know. But, I can't help my feelings. If anyone were to judge me for thinking this way, I would gladly invite them to walk a mile in my shoes, then, we'll talk.

This road we are travelling on comes with no guide. You wing it. Fly by the seat of your pants. Making life or death decisions. Not easy, this road. No, not easy at all.

Tuesday, March 6, 2012

Getting settled

Whew, yesterday was busy. Got a lot of things organized. My closet in the master is a walk in and huge. Love it. Did some organizing there. Laundry. I even managed to get to Trader Joe's. Husband loves their carrot cake muffins. I surprised him with some. I was craving avocados, I got 4. Took our microwave to the church, someone needed one. We have a built in microwave in the new place. Nice one, stainless steel. Warmed up leftovers for dinner.

Husband slept until around 4 PM. Checked on him throughout the day. When he woke, he was not in a good mood. Seemed angry at me. Part of the process. I ignore the bad mood.

Husband is up early today. Said he had a bad dream. Said it scared him. He's already had a carrot cake muffin. Very confused. I am trying to post and he is hinting he wants breakfast. Give me a minute, OK?

This week could be the week we get results from genetic testing. I don't know why I am so anxious. Waiting for Dr A to call me. He may want me to bring husband in. Don't know. This waiting has not been bad, probably because of the move, had other things on my mind. Now that we are at the stage of "any day now", I am anxious.

I put the job search on hold because of the move, now I am wondering do I pursue it now? I just don't know. I may advertise housecleaning services here in the neighborhood. Know several people around. Whatever God wants me to do, I will do it. Waiting on Him.

I let Jack take the car to school today. We moved out of his school district, can no longer take the bus. I did not want to drive. So, today I will put the final touches on the house and be done. It's been a lot of work. But so worth it.

The dogs are adjusting. Bessie, the big one, misses her big back yard. I can tell. When I let her outside, she will look up at me, then slowly go out the door. Snowball, my baby, is doing great. As long as I am with him, he's all good. Doesn't care that the backyard is smaller. My crazy animals.

I want today to be a good day. Husband is still on the irritable side, but, with a good breakfast, he may come out of it. I ever know what to expect with him. He may sleep all day. Or, he may wander the house, making crazy comments, asking many questions.

The only thing about this disease that is predictable is, you never know what to expect. Keeps me on my toes.

Monday, March 5, 2012

"Fish Guy"

We did it. AND, we have phone & internet. Not on Saturday as cable company said, but they sent a tech out late yesterday afternoon. He had to do something on the roof. I am happy to report I am back on line and moved into our new home.

The actual move went so smoothly. Our church youth group showed up around 8:30 Sat morning. There were about 20 kids and two adults. They had the house emptied in 2 hours flat. Pat & Tyler moved the big fish tank. That was a job in itself. It's a big tank with BIG fish.

Kristen & I went to the old house yesterday to clean. Took me about 1 1/2 hours and done. As I was leaving the old house, Kristen was waiting for me in the car, I said to the house, "Good bye, I am not sorry to leave you". With that, I closed the door.

Tyler came to me Saturday very upset. He said when he arrived at the old house, husband did not know him. Kept calling him the "fish guy". Tyler at first thought he was joking. Finally, he realized husband did not know him. He went to husband and said, "Do you know who I am?" Husband said, "No, but I think you are the fish guy, right?" My son sat down and kept saying, "He didn't even know who I am", several times over. My heart broke for him. Tyler said, "Mom, he's really going to die, isn't he?" I just nodded my head. What could I say?

Husband has been OK so far. Of course, memory is a constant issue now. Walking is more slower, more of a shuffle and dragging of the feet.

He told me last night he likes the new house. Said it's more comfortable than the old one. I agree. Or, maybe he too is associating the old house with bad memories like me?

I love my new house. I will make new memories here, ones that will not include husband. It will be just me. Can I do it? I think I can. Actually, I have no choice now do I?

Friday, March 2, 2012

Oy Vey

I was so tired tonight, I went to bed at 9. It's now almost midnight and I'm still awake. Can't sleep, thinking of tomorrow and moving. I am so tired, my body feels as if it will give out, but I still can't sleep. Oh, how I envy the people in my house. They are all warm in their beds, sound asleep. Me? Wide awake. Absolutely exhausted and wide awake!!!

It's been a bad day. Everything that could go wrong, did. And, the weather decided to turn nasty. It's sub zero temperatures with high winds. Lovely weekend to move, right? As we were leaving the new house tonight, I had to stop for gas. As I was paying at the pump, my hands were so cold, they wouldn't work right and I had put in my pin number 3 times before I got it right. Miserable. As I got back in the car, husband said, "What took so long?" Jack, knowing the bad day I had and the mood I was in, said, "DAD". In other words, LEAVE HER ALONE!! All was quiet as we drove home.

Patrick took the TV's to the new house this afternoon. They are flat screen TV's, (bought when we had money, back in the good ole' days). Didn't want anything to happen to them.

Husband has not been good today. He is so confused I sometimes feel guilty moving him and taking him away from what he knows. He loves the new place, it's just that he knows what walls to hold onto when he is attempting to walk in this house. The new house has big, wide hallways, and when he DOESN'T use his walker, well, he will be in trouble. Also, there are two ways to get into the kitchen and living room. He's gonna get lost, I just know it. I caught him wandering the house tonight. I asked him what he was doing and he replied, "I'm trying to memorize the new place". Crap. Why did you have to go and say that?

The dogs are totally confused. They kept looking at me tonight with a serious look in their eyes. I told them (yes, I talk to my dogs) that we were giving them a new house with a new backyard. I told ole' Bessie that squirrels will no longer walk the back wall and taunt her. Both of them looked at me as if they understood. I also warned them that the new house has beautiful tile floors except in the bedrooms, and, if they want to run through the house, they better be prepared to slam into a wall. I swear they understood me because they looked sad after that.

I should try and lie down so I will end this post. If things go smooth tomorrow, I will have cable and internet. But if it's anything like today, well...............Let's just say I will post when the internet is up, OK?

If walls could talk

Moving should be left to the professionals. Ugh. Old house is showing emptiness, new house is beginning to show love and life. Tonight is our last night here.

As I was unpacking in the new place yesterday, so many memories came to mind. I just want to be out of this house for good. It's not the house, it's what transpired in this house that I want to be away from. I want it all behind me. I want to close the door on this house that held so much heartache. The symptoms, the failing memory, the falling, the fear that set in in 2009, the questions, and, then, the diagnosis.

Yes, I want it all behind me now. OK, so husbands' going to die. OK, I get it. I associate this house with what's wrong with husband. So funny how we associate things with bad news.

I remember our family dog, Frauline. She was a big, fat Doberman Pincher. A gentle dog, she thought she was one of the kids. When my mom took her to the vet and they put her to sleep, I was with my mom, eating a banana. After they put her to sleep, I did not another banana for years. So, you see? I associated my beloved dog dying with eating a banana. Same as this house. This is where we lived when husband was diagnosed. I want to leave this house for good.

Thankfully, I have had a lot of help this week. Kristen's friend, Wayne has been taking loads this entire week. Washer & dryer was taken yesterday. It's almost done.

Husband has been driving me NUTS this week. He can't help it, but, it's still driving me nuts. He insisted on staying with me ALL DAY yesterday at the new place. Oh, that was fun. On the way home I mentioned that I would be doing all final touches tomorrow, (today), he said he would come with me, again. I said "NO", stay home and rest. In other words, I need a break from him today. Too much to do. Kristen and I will knock out the rest, husband will stay home. I've kept Jack out of school today, he is going to help husband with the tools.

When I told Jack this, he said, very sarcastically, "Gee, thanks mom". I replied back with a very sweet, motherly, loving tone, "Oh, you're welcome sweetie". We then started to laugh. He's a handful, that husband of mine. And, you gotta laugh when you can.

I don't know when I'll post again. Cable will be transferred tomorrow, and, if I have any strength left, I'll try to post tomorrow night.

Until then, pray for a smooth move, no sudden seizures and, no getting lost in the new neighborhood. I know the neighborhood, he knows the neighborhood, it's just that he forgot that he knows it!!