Husband's last camping trip

Husband's last camping trip

Thursday, September 29, 2011


As I've mentioned before, Fall has always been my favorite time of year. Not so much anymore, but, I have to say, I am enjoying the cool mornings. It will get warm during the day, but when the sun sets, the cool comes back. Refreshing. Or could it be that I have accepted the fact that along with the flowers and trees, my husband will die?

When I look back to last year this time, I have changed. I am now more accepting of this disease, have learned to go with the flow. I can now recite statistics in my head, watch for signs of progression, swallow hard when those progressions happen, answer his many questions over and over without a flinch, all the while holding down the fort.

Not that I am super woman. I have my days, I have my moments. This year though, there has been a change in me. I feel an inner strength I always knew I had, but, needed to find it. I found it in God. He keeps me going.

Nothing got "fixed" yesterday. Yay.

Found out I don't have to purchase books for my Doula certification. Can check them out at the library. Another Yay. Thinkng alot about it this morning. Thinking this is a step in the right direction for me and my future. Who knows where this will take me? All I know is that I feel very strongly that this is what I was meant to do.

Husband is still sleeping, Jack has left for school. It's quiet here. Oh, how I love these quiet mornings. All too soon, he will be awake and the quiet of my morning will be screeching to a stop. I cherish while I can. My time.

Wednesday, September 28, 2011

Mr Fix-it

Had an interesting day yesterday. Husband puttered around in the garage. He wanted to make a bench. I let him stay there for most of the afternoon. That kept him away from the slding glass door he jammed up the night before. Happy to report, sliding door is fine now. It also gave me some alone time.

I will say though, this week, he has been on a "fix it" stage. Last night, the arm on Jack's glasses came off. Luckily, he saved the little screw. Husband fixed it, but not without a fight. Jack wanted to do it himself, husband insisted on doing it for him. Me? I was out in the living room, and as I heard them talking, I knew it would not be pretty. So, being the person that I am, I just turned the volume up on my TV.

It was one of those, "I just don't want to deal with it" kind of circumstances. My body said go help, my mind said, can't deal right now. Happily, the glasses got fixed, but not without a fight.

As I was doing dinner dishes last night, the garbage disposal decided to clog up. Glad it happened during "Fix-it" week, (yes, that was a sarcastic remark). Husband was watching me, I asked him to go get the plunger from the master bathroom. After what seemed like a long time, he came back with the plunger. I asked him what took so long. He said, "I forgot where the bathroom was." He stood over me, "guiding" me on how to un-clog the disposal. I tuned him out and un-clogged it myself. Later, I found him in the kitchen, looking down the drain and disposal. I told him to step away the from the sink. It was around that time that Jack's glasses broke, so, his attention turned to another "fix it".

As I was going to bed last night, I noticed the chain on our ceiling fan was broke off. I asked him about it. He said he tried to "fix it", but it broke. He looked up at the fan and said, "I'll check it out tomorrow". Uh, no, I said, leave it alone.

I am hoping for a day where nothing "breaks". I don't know what has prompted this. I have never seen this side of him before. It's absolutely hilarious if you ask me. Everything in my house is getting broken, but not by it's own. By husband. Have to watch him today. No more Mr Fix-it.

I know, I'll take him to his Dads' house. Let him "fix" his house!!!!

Tuesday, September 27, 2011

A Doula and a "Fix"

After doing some research and emailing Sunday & Monday, I got a response from the Doula Association. I have been invited to attend the classes on November 5 & 6. I am looking forward to that. The cost is $400, two weeks in advance, plus the books you have to buy. I don't have the money for that, but, will sign up anyway. Who knows? Putting my faith in God for the money, as I feel I have been led down this path.

The cost for hiring a Doula ranges, but it's substantial. It would mean I won't have to worry about money, well, if I get the clients that is. Don't know if I want to branch out on my own, or, work for an agency. If I work for an agency, then I have to pay them a percentage of what I earn. May go out on my own.

I feel good about this. It could mean I would have a life after husband passes. I could support myself. I will have my Widows' Pension, but, that's not enough to live on. Instead of moving in with one of my kids, I could live alone, take care of myself. Who knows? I believe a door has opened for me and maybe, just maybe, things will be better for me.

On the Dementia side, husband is so so. Last night, he was messing around with the sliding glass door. Said he was "fixing it". I told him it wasn't broke, to leave it alone. When I went to let the dogs out, I found out just what he was "fixing". He had locked the door from the bottom, the door was off the track, I could barely open it. The lock on the bottom of the door is so hard to unlock. Today, I will have to get it right. This is frustrating for me, as he does these "little things" alot. Crazy things, silly things. When I told him not to touch the door again, (sternly), he looked like a little boy pouting and said, "I didn't touch the door, I promise". I need to watch him more when he is trying to "fix" something that is not broke. Ugh.

There are times like these that I get so sad and frustrated. I don't like this. I hate it. I thought the days of watching and caring for children were gone. Now, I have a husband, a fully grown man, who I now have to watch like a hawk. I have to make sure he doesn't get into things, doesn't make a mess, doesn't get hurt, doesn't fall, doesn't get lost. Try telling a grown man, bigger than you, to behave, do not touch things, mind your manners.

Sometimes, when he has "fixed" something, he gets a sense that he can "fix" anything. He will go around the house looking for something else to "fix". The only thing needing "fixing" is him. And he can't be "fixed".

Monday, September 26, 2011

Crazy for normal

Whew, it's been a weekend. Glad to see a new week beginning. Spent most of Saturday morning at the hospital, visiting Summer and Jordan. Then, home for a shower, church and Kristen getting baptized. Came home, late dinner, vegged in front of the TV.

Now, back to "normal".

Husband is OK. Not good, not bad. His walking has become more unsteady. His feet are more floppy than usual. As I watched him walk yesterdy, it reminded me of when people wear the swim fins. His feet are just flopping as he walks now. Just as he was falling asleep last night, he jerked so hard he almost fell out of bed. Scared me. I asked if he was OK, mumbled something about his toe getting caught in the blanket. After that, there were more suttle jerks lasting about 30 minutes or so. This has been happening alot lately. Once he falls asleep, the jerking seems to stop. All part of the process.

Friday, when Summer was having Jordan, I got to be a normal person. I got to be with normal people. I got to have normal conversations. When I would talk to people, they listened, not with a blank stare, but listened and understood what I said. I can honestly say, I really enjoyed that. How I have missed that. I didn't realize how much until I was away from husband, that I crave having a conversation with normal people.

Then I come home and reality hits me smack in the face. I come home, excited about the birth, telling husband how good Summer did, how beautiful Jordan is. And I look at his face. Vacant stare. And it hits me. He doesn't understand anything I am saying. Back to my world.

Could it be that's why I talk my fool head off at the clerk in the grocery store? Could it be that I actually talk to telephone solicitors? I am so hungry for normal conversations, desperate even. I sometimes wonder what these people think of me. Must think I'm crazy. I am. Crazy for normal.

Sunday, September 25, 2011


I had an experience Friday. Kristen's best friend, Summer, had told me she wanted me to be her birth coach. Friday morning at 6:45, we got the call. Off we went.

I gave her pointers, massaged her feet, legs, back and forehead. I put her in the tub, poured warm water all over her, talked to her, soothed her, told her how great she was doing. She had one child before, a girl, but chickened out at the last minute and got an epidural. This one, all she did was stare into my eyes as each contraction hit. She did everything I told her. I was so proud of her. She did it, au natural.

At 1:48 that afternoon, Jordan Joseph entered the world. What a sight, as he came out. He is beautiful, as expected. After all, her little girl is breathtaking beautiful. Jordan is no different.

When Tish had Leia, the nurses told me I should look into becoming a Doula. When Alex was born, they told me the same thing. On Friday, the staff at Presbyterian recommended I look into it. I told them I think I'm too old. Nonsense they said.

This morning, I am seriously thinking of doing something like this. The joy I felt when I had my kids, well, maybe I can share with other women. There is no other joy like that of giving birth. None.

Life after husband passes will be changed, forever. But, maybe I can change too. Maybe, just maybe, I can change too, like help a woman bring a child into the world with happiness, not just pain. Maybe God is leading me to this. All I know, today, is, I am going to look into it. Let's just hope it doesn't cost money. I don't have money to do that. Maybe I can make a difference in a womens' birth story.

As we were leaving the hospital Friday, Summers' mom gave me a big hug, cried and said, "Oh Sue, we couldn't have done this without you. Thank you, thank you".

So, welcome to the world, Jordan Joseph, and, maybe, just maybe, I have found my calling. I've always been a late bloomer.

Thursday, September 22, 2011

Paper towels

Things seem OK in my little corner of the world here. Husband has had his moments where he "checks out", but, for the most part, has seemed OK the last few days.

I am so used to this roller coaster, that it now seems "normal" to me. I was thinking last night about a saying, "roll with the punches". It dawned on me that's what I do now. These "episodes" used to scare me. They don't anymore. If we go to that dark place, I take a deep breath, enter in and just go with it. I don't know how long I have to be there, but, I go anyways. Don't have a choice but to go. Whether I like it or not.

When people ask me how he is doing, I have to say not good. To me, it feels so negative, but he is not doing good. Then, I say that we have good days and bad days, that he may be having a good day when they ask. I always tell them I know I sound negative, hate that I sound negative, but, he won't get better, he won't be normal ever, he'll never come out of it.

When we lived in Fallbrook with my mom, she had some funny habits. For instance, she always put a paper towel on her end table in the living room. She had one on her nightstand in her bedroom also. I thought it was funny, as we had coasters, but, she did not use them.

Yesterday, as I was putting away laundry, I looked at husband's nightstand, and lo and behold, there were paper towels on the nightstand. It was neat and tidy. Everything in it's place. It took me back to about 2 years ago, when I was cleaning and dusting. I re-arranged the things on his nightstand. But, at the time, there were no paper towels there. He became so angry that I had re-arranged his stuff. Yesterday, as I was thinking about that, it finally made sense. He would forget where things were, so they had to stay in the same place at all times. It made me sad to think of the hell and confusion he had to be going through. But, paper towels? Don't know what the relation is, just know that my mom used to do the same thing. Funny.

My mind goes to alot of places nowadays. Some days I wake up and think about when he's gone. Where will I end up? Other days, I try to think back to when he was well. I can't remember alot of those days as this disease is so big, it consumes everything. Even me. It has a way of clouding the memory of the one not afflicted with it. Your whole life is centered around it. You live it and breathe it. It's always there.

Wednesday, September 21, 2011

and we're off

I come here early in the morning. My mind is fresh, my head is clear. Husband is still sleeping, so the course of my day has not been set yet. I never know what I am going to post about. I start out slow, then the mind and heart come together and the words just start to flow. (was that just a rhyme?)

It's good for me to post. I get it all out here. I express myself better here than I can talking it out. One day, when all of this crap is over with, I probably won't have anything more to say. A new chapter of my life will begin, and yet, will I continue to post? Don't know.

Husband had tremors yesterday. Kristen went to wake him up for dinner. When she came back into the kitchen, she told me, "Mom, his legs were vibrating". This is the first time she has seen the tremors. She said that scared her.

We see Dr Q on Dec 1st. Because Medicare will be in effect in December, I have chosen to follow Dr Q at his new practice. I like Dr A, but, feel more comfortable with Dr Q. He listens to me, knows that I am not dumb when it comes to this disease, that I have done my homework. Husband is looking forward to seeing him.

I saw a commercial yesterday about the same mood stabilizer husband is on. It said that patients with Dementia are at risk taking this drug. What? Husband has responded to it beautifully. My question is, how at risk is he, and, what more damage could it possibly do? Questions for Dr Q.

Husband is now up. I have answered the same question twice now. He seems OK, but quiet, a little confused. Don't know what today will bring. He doesn't understand much anymore. He will ask me the same question daily about finances. He thinks that when we get his SS Disability, it just sits in the bank. Try to explain to him that that's what I pay bills with. He just doesn't get it. After I explain to him, he says, "But, we get this money, it should still be there". Then, I explain again, and again, until I get so frustrated, he senses it. I try not to explain finances to him. I avoid the subject, or try to.

By the way husband is acting, I can see we are going to have a most interesting day. He's confused. He seems lost. So, here we go.....

Tuesday, September 20, 2011


My life is so exciting. I am looking out my living room window watching my neighbors scrape old shingles off of their roof. Looks like they are getting a new roof. A big truck just came, delivering shingles.

Huh, my life now.

Husband has been up for 20 minutes. I have just gotten through answering the same question 3 times.

Anyone watch Dancing With The Stars? I'm not crazy about the show, but wanted to watch for several reasons. Rob Kardashian is on it. That's the most active I have ever seen this guy. Mostly, he is in bed, living at his sister's house, doing.............nothing. Nancy Grace is another. While she will never be invited to my house for dinner, I have to give her credit for going on national TV and dancing. Her kids are cute too. Ricki Lake is another one. I love her. She is fresh, bright and funny. I thought she did an OK job. Then, there is Chaz Bono. I admire him for being the stand up person he has become. Where I don't believe we are born the wrong sex, I have to give him applause for what he believes in. I thought he did fantastic. Was scanning the audience for his mother. She was not there.

When I think of Chaz Bono, and all the lonely times he has gone through, I think of husband now. In husband's mind, he is alone, he is lost. He is trying to remember who he is now. He thinks he knows what he wants, but has to reconsider all the time. He never trusts his decisions, hence, I make all decisions. I can see him at times going in circles, wanting to make a decision, but doesn't know how anymore.

Once again, I do not believe that we are born the wrong sex. It's all in the mind. But, it was a decision he wrestled with his whole life. A decision he had to make public, whether he was applauded or rejected, it was his decision. We need to honor that.

Now, I come to husband. He did not ask for this disease to come and destroy him. He had no choice. His world now consists of constant confusion. It's in everything he does. It even affects his sleep. It's in what he eats, where he is going, what day it is, what month it is, what time it is, what he wears, when he takes a shower, did he take his meds, where is his son, what are we doing today. These questions are asked of me daily.

Chaz had a choice and he made a difference in his life. My husband did not have a choice and what a difference it made in his life.

Monday, September 19, 2011

937 Questions

Monday morning. Pretty cool this morning. I can hear husband rustling around in the bedroom. He must be up. That means I will be interrupted 937 times before I finish this post with questions of the day. These questions will be repeated over and over. Welcome to my world.

Since husband has been taking the mood stabilizer, there has been a big change in him. He has seemed less agitated, takes things in stride and if he forgets, he just shrugs his shoulders and says, "I forgot". I have noticed also, since he has been on this med, MY stress level has gone way down. So, kudos to mood stabilizers!! Yay.

As I was making his dinner yesterday, he came into the kitchen, and with sincerity in his voice, thanked me for making it special for him. Now, if you knew husband before this disease struck, that wouldn't of happened. Not that he wasn't sincere before, but, he was the macho guy. He was the big chief on job sites. He was someone Jack looked up to. Not this person now, this man who can't think for himself anymore, can't walk anymore. But, he's still husband to me, just in different form.

Sometimes when he is talking to me, stubling over even the easy words, I get a catch in my chest. I always go back to when we first started dating. What a big strong guy he was. Everyone loved him. I remember the summer we started dating and how he took me to the state fair. As crowded as it was, so many big names in the construction field would stop us, knowing husband. I remember how proud I was to be with him.

Some time ago, we saw one of these people. The look in their eyes when they recognized him. They looked at me as if to say, "What? Why?" We also saw one of his good friends back in the day. Some friend, he looked uncomfortable around husband, couldn't get away fast enough. I felt bad for husband. Promised he would call, never has. It's been 6 months or so.

Don't be afraid to be around him, I say. You can't "catch" what he has. He's not a leper. He's not dirty. I feel sad for husband. I wonder if he ever thinks about his "friends" from back in the day. Even his closest friend. He's a cop. He lives a few blocks from us. His mother passed a few months ago, she lived down the street from husband's dad. Visits husband dad. Always asks about husband. Always promises to call husband and take him fishing.

When husband is gone, I wonder, will they feel guilty? Will they come to me and say, "I shouldn've visited him more?" Please don't say that. You all had your chance. Plenty of chances.

I am takkng husband fishing in the next week or so. Oh, how he loves to fish. I will take him to the Jemez Mountains. Let him fish in the streams. Before the snow hits up there. Want to see the changing of the leaves. I will sit on the bank of the stream, watch husband fish. I will remember back in the day when we used to fish together. I can't anymore, have to keep an eye on husband. Always watching him, like a child. Making sure he doesn't fall into the water. I will close my eyes for just a second, and think back to the days when Jack was little. Jack would be right by his daddy's side, watching him fish, asking 937 questions. And husband, being ever so patient and ever so kind, would say to his child, "Watch daddy Jack, watch daddy".

Sunday, September 18, 2011

Special Weekend

Husband's baptisim was great last night. He was very nervous before we even got to church. Once there, he was made comfortable. There were 10 others being baptized as well. Husband would be going last.

Before we left, we had one big kahuna of a storm. Thunder, lightening and heavy rain. As we were walking in, we had a couple who were showing us where to go to wait for instructions before service began. Husband asked the man, "Did you see that storm we had earlier?" The man said yes. When we got to a locked door, husband turned again to the man and said, "Did you see that storm we just had?" Man said yes again. When we got into the building, he seated us, husband asked him again if he had seen the storm. Bless this man, he acted as if it was the first time he had been asked that question.

I sat with husband during services, and, at the end, he was lined up with the rest. They had two people assisting husband up the stairs and into the water. These two men, how wonderful they were with him. Before you go under, you can say a little something about yourself. Husband was scared to say anything before service. I told him to let God guide him on what to say. When he got down in the water, he went to the microphone and spoke. From his heart. Several people including me, had tears. It was beautiful what he said. When he was finished and after he was baptized, the audience roared. Neat.

When we got home, he asked where I was sitting in church. I was sitting right next to him, but he had forgotten. When I told him this, he just shrugged his shoulders and said, "I don't remember you sitting next to me." That's OK, I said.

Today we have a special dinner, for him. He is excited for that. I love to see him excited. Like a little kid. The kids will be here. They were there last night as well. This is his special weekend. We will be together, he will enjoy the company, he will have his special dinner.

Now, as we journey into the unknown, at least I know he is with God. His eyes shine again. The love of God is in him. God will now pave the way for him to enter eternal rest.

Saturday, September 17, 2011

Truck, Clutch and that Alarm

Husband's truck was repaired by a dear family friend. All it needed was a clutch. We picked it up Wednesday. Husband is beginning to realize that he cannot operate any vehicle, but, I still got the truck fixed. Our dear friend charged us a very small amount, something I could afford. Husband is happy he has his truck. When he comes into the living room, he will look out our big window at the driveway, see his truck and grin. If that's what it takes for him to be happy then so be it.

On a funny/sad side, the truck has an alarm system that is so annoying. While the truck was at the repair shop, Sean took out the battery, just for the sake of the life of the battery. Since we got it back, husband cannot figure out how to disengage the alarm. He has forgotten. So, every couple of hours, husband will go out and try to disconnect this most annyoing alarm system. It's kind of funny because once the alarm goes off, husband gets agitated, the dogs start to go crazy in the house, and I, the last person you would ask to fix this alarm, tries to hush the dogs, tells husband to just forget it, all the while, wanting to laugh and cry at the same time.

A few years ago, this would not have happened. He would've known exactly what to do. Last night, he came into the house looking defeated, said, "I need Pat to come and help me". The look on his face said it all. He doesn't remember how to turn the alarm off. I have talked with him since, said to look at the funny side of it. Told him that I think the neighbors will be most happy about the alarm once it's turned off. He did kind of laugh at that one. He said, "Maybe the dogs too?" Oh yes, my dogs will be most appreciative. You have to laugh about it sometimes folks. Otherwise, you could go crazy.

Got a call from Physical Therapy yesterday. Was surprised who called me. It was Tyler's fiance, Susie. Didn't put two and two together when I made the request. Susie works in Physical Therapy. She told me what they would do with husband, how it all works. Husband is happy we will be dealing with our Susie. Our appointment is Oct 6th. Not too far off.

Husband is still sleeping. Have to wake him up. I need to go grocery shopping and promised I would take him with me. He sounded excited before he went to sleep last night. "WE have to grocery shop tomorrow, right?" "Yes", as I sigh, "we sure do".

This has been a good week though. Husband has been stable, not too many episodes. Had alot of jerking night before last. It did subside after about 30 minutes. Now, if only we can get that damn alarm off..............

Friday, September 16, 2011


Husband's baptisism will be Saturday instead of Sunday. When they called to tell me, husband began to get nervous. Asked me if I would be with him. I told him that the men would help him up the stairs and down into the water. He still seems nervous this morning.

I will still have a special dinner for him Sunday. The kids are coming, which makes it even more special. He is excited for the kids.

When Hospice came the other day, he was telling her about how we now go to church. His eyes lit up, he looked like a little child talking to his teacher. He looks forward to church every week. I am thandful for that.

Fall has arrived here. Lovely weather, crisp, rather cool mornings, warming up, but not enough to use the air conditioner. All the windows and doors are open during the day now. As I was driving home from taking Jack to school yesterday, I noticed the trees. At the top of each tree, you can see some discoloration in the leaves. Soon, they will turn to a yellow, then brown. By November, all the leaves will be gone. The trees will be bare. And, we will hunker down for a cold winter.

Last year this time, I didn't think husband would still be here. I am glad to say he is. He has lost so much this past year.

Husband continues to talk about moving. Said he wants to go to Colorado when Jack leaves in July for the Air Force. I don't know what to say. We can't afford to move at this time, and I am not wanting to leave his Dr's. Don't want to start over with a new Dr, especially when I don't know where he will be mentally next July. Don't get me wrong, I do not want to live here either, but hesitate in making such a big move when his mind could be in a fragile state. It's all up to me. That's a big decision, have to really think this one through.

Got the referral from Dr A. for Physical Therapy Evaluation. Once they observe his attempt at walking, we will see what aid he needs. Glad I found out those services were available to us.

Another week has gone by. I cannot believe it's already the middle of September. The Holidays will be here before I know it. Don't want to think about it. It's not the same anymore. Just another day. But, if this is to be his last holiday season, I want to have good memories of him. Not this person now, the person he was. The man before this monster struck. Yes, way before that.

Thursday, September 15, 2011

A visit from Hospice

Hospice came yesterday. So glad I called. The nurse was one of the nicest people I've met. After talking and observing husband, she told me he was "not there yet", but the time is coming. She said I did the right thing by calling, get an opinion, see where we are at, and, most important, he is now registered with Hospice, so, when the time comes, they will help me along with the final stages.

She explained to me about his memory loss. She described it as layers in the brain, and with his type of Dementia, rare, that is being shredded. I told her he remembers things from childhood, but, cannot remember from hour to hour even the little things. Because the most recent events are the outer layers, these are the layers or memories that are being affected. So, he suffers from short term memory for now. She said eventually, as this disease progresses, all the layers will be destroyed. She also said that once the outer layers are destroyed, it is only a matter of time before the inner layers die.

So informative. She will visit once a month to see where we are. She told me that I need to make an appointment with Physical Therapy where they will observe his inability to walk unassisted, recommend what kind of assistance to use, cane versus walker. Did not know that there were several types of canes. She believes he needs the four pronged cane, as it helps with balance too.

I am also to make an appointment with a Case Manager at the hospital to see what other services are available to me.

I felt better after her visit. We have some answers, for now, we have other resources, for now. She was everything I asked for and then some.

Husband has seemed upbeat lately. It could be the Mood Stabilizer. I don't care, I'll take it any way I can get it. Of course, the memory is poor and his "walking" is really bad, but, he is smiling again.

I also have to buy him a new pair of shoes. Good ones, for support. I don't have any extra money for those right now, am hoping for a sale somewhere.

This is where we are now. In between needing Hospice, but having support from Hospice. Husband seems happy, for now. Funny how people take even the smallest of things for granted. What may seem small to some, it's big for me. And I'm OK with it, for now.

Tuesday, September 13, 2011

A Baptism and a Plateau!!

The past few days have seemed somewhat "normal" around here. Husband slept alot yesterday. It was quiet. Checked on him throughout the day. Breathing was normal, no sudden jerking, no choking. That's always good. He woke up around 8:30 in the evening. I thought he would not sleep through the night, but, not only did he sleep good all night, he slept in this morning.

Memory seems OK so far, walking is labored, as usual. We had one panic attack last night, around 10:30. Could not find his cane. Why was he looking for his cane so late at night? I don't know. So, he comes to me in a panic, asking me where his cane is. He ended up in the garage where he found his cane. Can't figure out why it ended up in the garage.

This morning we will sit down and do our "homework". We are taking classes at church. Of course, I will have to do husband's work for him. He likes to "study" though. He loves it when I read from the bible. He closes his eyes and seems to relax.

Husband will be baptized this Sunday. I hope the kids attend. It's important to husband. I am going to call father in law. Invite him also. Afterward, I am making a nice lunch for husband. His favorite foods. He is nervous about it, just have to reassure him each day.

Not much more to say. It's a small plateau we are on right now. Don't know when it will stop and we go to that dark place, but, for now, I'll enjoy what is left of husband.

Monday, September 12, 2011

Moving right along

We all have a specific walk. We all walk differently. Some of us walk fast, some slow. Some of us walk with a purpose, some walk without a care in the world.

As I was thinking about this this morning, I had to stop. I don't remember how husband used to walk when he was well. I can remember him going out the door to work, I can remember him going shopping with me, I can remember him on the beach, but, I can't remember how he walked normally.

It's funny how the little things hit me. I can't remember.

His disease started to affect his walking in 2008. It started out as a limp in his left leg. It turned into a slight shuffle. Then, the left leg would drag. One day at work, right before he was laid off, someone asked him why he walked with a "limp".

You know how some dolls are made? How their torso is hard, heads are hard. The arms and legs are kind of flimsy? Husbands legs are like that now. Flimsy. They flop when he tries to walk, they drag, they are spastic.

And I can't remember him any other way. After all these years of marriage, I can't remember how he walked before the disease hit.

Mood stabilizer has helped some. He seems more calmer. Glad I insisted on it. Sure has helped. He seems more open, willing to talk about his "issues", mostly, his attempt to walk.

So, we march on. Merging ahead. Don't know what's around the corner, but, I'll be content with what we have now.

Hospice comes Wednesday. See what they have to say. Am anxious about his weight. There was significant weight loss the last month. Will see what the scale says on Wednesday. Hopefully, the last weigh-in was mis-read. That was an awful lot of weight to loose in 2 weeks. If the scales are correct, he lost 15 lbs in 2 weeks. Wednesday will give me the answers on that.

I can honestly say that the last several days have been good. Of course the memory is poor, the walking is labored, the disease is doing it's job, but, we have been OK with it all. It's the way it is. As in anything else that comes my way, I just go with it, tackle it and move on.

Sunday, September 11, 2011

Stairway to Heaven

Yesterday was very calm in my house. Busy with house cleaning. Went to early service at church, then on to our new members class. There was a large group there. We sat at one round table and gradually, the tables filled up.

We had to fill in the blanks on one work sheet, so I had to do double duty for husband and I. Good thing I can write fast. I was sitting next to a couple who were originally from Canada. Elderly couple. They were so nice, kind of like a Mom & Pop. As I was writing in both our work books, she leaned over and said, "I notice you are writing for the both of you. Did your husband have a stroke"? "No, he has Dementia, he can't write anymore, so I have to do for both of us". She gave me a simple smile, nodded her head and said, "I'm so sorry, I knew there was something wrong with him, but, I thought it was a stroke". She was so loving, so kind in her words. I felt comfortable around her.

A stroke? I wish he did have a stroke, because then, there would be hope of recovery. He would have physical therapy, speech therapy. May not come back 100%, but, he'd live.

God is so powerful though. There are days when husband remembers what Pastor said the week before. He remembers parts of a sermon. Where he can't remember even the simpliest of things, like, his own son, God can reach him. That is neat.

I know when husband passes where he is going. And to that, I'm OK with. Yes, I will miss him, I will ache for him, I will feel his loss everyday, I will mourn for him, I will be sad that Jack does not have a living dad. But, it will be OK. He will be with God. That's all that matters.

Husband seems much more calm these days. He had some of his "visitors" the other night. Husband has conversations with these "visitors". When the "visitors" come, husband speaks clearly, making sense. His voice is so soft. Who are these "visitors?" I don't know, but, I'd like to think God is sending his "helpers", easing and making husbands' path to Heaven clear.

And that, my dear friends, is a good thing.

Saturday, September 10, 2011

To drug or not to drug

This has been on my mind for the past 2 months. I am torn between wanting to help husband, all the while knowing it won't do much good. Or, do I stop all drugs and just let this disease win? No matter what I do, the disease is going to win in the end. Stopping, to me, means giving in, giving up. But, what other choice do I have? There is no cure. There is nothing they can do. Maybe make him more comfortable? Nothing is working.

He still has jerks and tremors at night when he goes to sleep. He still chokes. He can't walk anymore. His memory is fading. Kind of like trying to give a dead fish water, in my estimation.

Because I am the POA, I can make these decisions. But, what if I make the wrong decision? What if there is something that can help, at least for awhile? I woke up with these questions.

I have many questions for Hospice when they come Wednesday. Hopefully, they will have some answers for me. I am hoping they can guide me in the right direction. Also, when we go see Dr Q in December. I guess for now, I will have to be content with what I am doing.

Tonight, we start our classes at church. They have a new members class, getting to know the church and all. Husband is looking forward to it. So am I. They know husband is ill.

Had a good day with husband yesterday. He seemed calm. I found him in the garage, working on a piece of wood. Said he was making a bench. He was in there for awhile. It was good for him. He needed to think he could actually do something still. When he came in, I was sitting on the couch using my laptop. Jack was at the other end watching TV. Husband said, "Where's Jack?" I looked up, pointed to Jack and said, "right there". Husband got "the look", I immediately thought to myself, "oh no", then, slowly, he turned his head toward Jack. "Oh, there you are". He shuffled down the hallway, I turned to Jack. The look on his face almost did me in. Jack said, "he doesn't even recognize me anymore". For a split second, he didn't recognize his son. Husband fell asleep for a few hours, had to rouse him for dinner.

Whenever these "episodes" occur, he sleeps for a long time. I don't know if it's seizure activity or what.

On a lighter note, fall is in the air. It was rainy and cool yesterday. Woke up to much the same today. Love it. The heat was a little too much for me this year.

Jack and I did alot of talking yesterday. It was fun. He is a funny boy. Kristen and I went to the Pharmacy, we laughed all the way there, inside and coming home. It was good.

Life is moving right along. I am trying to keep it all together. I have to. Everyone is depending on me. So, here's to another good day. Let's hope it lasts for a little while. I could use the break.

Friday, September 9, 2011

Welcome to my world

Since I got up this morning, I have told husband about Kristen's meeting at 10 AM 5 times. This is maddening and sad, all at the same time.

How can I explain it? Ever see a 2-4 yr old ask his or her mommy the same question over and over? Only to have them then ask, "why?" when you answer? This is my day, all day, every day.

Since yesterday, I have questioned myself. Can I do this? Am I really that strong? What will I be like when this is all over? I have had the shakes lately. It's because of this sudden turn yesterday. Husband has slipped. We are now off to that place I don't like to visit. Welcome to my world. I get to travel alot. One minute, I'm in the here and now, the next, we go to that dark place. Jack told me yesterday, "I don't even like talking to him anymore, mom." I can't blame him, yet, when I look at husband, seeing the vacant stare, the fear in his eyes, I am so torn. Between my husband and child. How can you choose? My husband has no future. My child has a future. I wish I were two people. Then, I could nuture both of them. This is one of those days when I question myself.

Frustrated with Dr A. He is insisting on keeping husband on the Aricept. I don't agree, it is doing no good. Dr Q said it would do no good, as his disease is rapidly destroying everything in his brain. For some people, it is effective. Aricept slows the process of destruction. However, in husband's case, it won't. His form of Frontal Lobe Dementia is an inherited form and does it's job, fast and furious. I am thinking of just not giving it to him. Scared about just stopping it, scared about continuing on it.

Dr A did however, agree to stop the Baclofen. It too is doing no good. He did listen to me when I said husband needed a Mood Stabilizer. I pick that up today. Will see how that works. I did not tell husband it was a Mood Stabilizer. Told him it was a stronger drug than the Baclofen, that it would help with the legs. It's so easy to "lie" to him now. He will not know the difference. In fact, I know just what he'll say. "You know, that new medicine is really helping me walk". "Yep", I'll say.

Since husband was enrolled in Medicare, I made an appointment for him to be seen, once again, by Dr Q. Dr Q went to another medical practice, but, with the Medicare, we can now go anywhere. Dr Q listens to me, knows I 've done my research. Don't get me wrong, I really like Dr A, he just doesn't know me well enough to know I fight for husband and his care. I do not take no for an answer. I insisted they test husband for specifics at the beginning of this journey. Dr Q listened to me. He saw in me what the other Dr's didn't. And look where we ended up? The diagnosis that proved me right. Not saying I'm so this and so that, no. Just saying that you cannot live with someone and NOT know something is wrong. Very wrong. So, I started my research, watching for signs and symptoms. They came on gradually, ever so slightly. One day, I would question my sanity, thinking I was wrong, the next day, something crazy would happen with husband, and I would be looking that up. Bam, there it would be, staring back at me. Those were very dark days for me. Dark.

The New Mexico State Fair starts today. We will not be going. Husband cannot walk but a few feet without stumbling. Those days are gone. Not that I just love the fair, I don't, but husband does. I told him we cannot go, he looked like a little child, said, "OK", sighed and shuffled away.

My heart hurts today. It hurts for all that we had and all that we lost. No, it's not fair. No, it's not right. But it's all I got left.

Thursday, September 8, 2011

A "not much to say" kind of post

I felt frustrated when I woke up this morning. Don't know the specific reason why, just did. Some people, when they get frustrated, they will try to find the actual reason why. I have watched them disect every minute of their day to pinpoint the reason they are frustrated. If I did that, I'd be more frustrated than before. When I get frustrated, I say it out loud, then go on with my day. I get frustrated, so what? Nothing to be ashamed, nothing to worry about, we all get frustrated. Some more than others. Big deal.

Husband has been OK. It's always like this though. Keeps me on my toes for sure. I took Jack to school yesterday morning. Got home, did my chores, sat down to make calls and answer emails, husband asks me, "Where's Jack?" "I took him to school, remember?" "Oh, oh, yeah, you took him to school", he says. It was as if he had to repeat it to memorize it. Life's like that now, repeat and repeat. It never ends.

Husband spends his days in bed mostly. But, when the phone rings or he hears me on the phone, he will come in the living room, sit in his chair and listen to everything I say. That, my friends, is the most annoying thing ever!!! I have told him that is rude, do not do that. Tish called yesterday. I had been waiting for return calls and thought it was one of the return calls I had made. Husband comes shuffling out of the bedroom, I told him it was Tish, not the Dr. He turns around, goes back in the bedroom. But, he did not go back to bed. Instead, he stood at the bedroom door, where I could not see him, and listened in on my conversation. What he didn't know was, I could see his shadow hovering at the bedroom door. I told Tish and we just had to laugh.

He is now suspicious of everything I do. He has told me that when we go to the Dr, I stretch the truth to the Dr. When the Dr asks how he is, he says he is just fine, nothing wrong with him. Dr then looks at me, where I shake my head and mouth the words, "Uh, no he's not". Dr always chuckles. He says he "has a little Dementia, but, it's not that bad". Says that if only he could get his legs to work again, he'd be fine. I just agree. No use arguing with him. Whatever.

This disease can test even the best of the best. Ever see the movie, Poltergeist? When the little girl disappears in the house? The professionals come to help. The father is skeptical of these people, wakes up one morning after a night of terror and says, in a sarcastic tone, "What side of the rainbow are we working on today?" Yeah, it's like that in my house everyday.

He is slipping deeper everyday. It's the little things that I see he looses each day. Ever so slightly. Sneaky, this disease. Sneaky and evil.

Wednesday, September 7, 2011

A step in the right decision

I wish there was a book, a resource sort of book that I could go to, look up what I need to do, get my answers, no second guessing, just do it and be done with it. Since there is no such thing, I make decisions based on prayer and faith in God now.

I made the difficult decision yesterday to make my first call to Hospice. Because I've never had the opportunity to speak with this organization, I thought I would call and see how I go about it. Was there a waiting list? Do you have to be 100% bedridden? Do you have to be on Medi-Caid or Medicare to qualify?

I spoke with a neat lady, who, with compassion, told me there is no certain time when Hospice steps in. Yes, it is the "end of life" additional help, but, they also counsel the whole family as well. They will come 1-3 times per week, depending on how much help I need at the time. If there is no help needed for that day, they will just sit, have a cup of coffee and talk to the surviving family members. Their first visit will be next Wednesday.

Husband does not know this. If he hears the word "Hospice", it will send him over the edge. So, once again, I have to lie to him, or umm, lie to the disease. I am telling him that because he is on Medicare now, Medicare provides the extra help without him going to the Drs all the time. I will tell him that they now offer just an in-home weekly check-up. Trust me, he will believe it.

During my talk with Hospice, she kept asking me if there was any sudden weight loss. I told her that when he was weighed last week, I thought they had made a mistake. So, I called the Drs office, got his weight. There has been significant weight loss. I noticed he looked a little thin, but I don't feel comfortable with this weight loss. I trust my decision and instincts. It's a good move on my part to get Hopice involved now, instead of at the last minute.

All these decisions are at times, hard to make. I feel I have a level head (well, most of the time) and know when to make a decision such as this. Once again, there is no reference book to go to. And, trust me, no one can tell you when the time is right, but you. There are people who "think" they know when the time is right, but, they don't live in my home, they don't see what husband or I go through. Mostly, husband.

Without going into details, someone told me yesterday that I shouldn't have called Hospice. Did I stand up for what I feel is the right? No. Since then I have wrestled with that conversation. I will stand up for what I believe is right for husband from now on. This is MY husband, MY decision and HIS right to be cared for by a professional. No one, and I mean, no one, has the right to tell me differently.

Ok, got that one off my chest.

I am waiting for Dr A to contact me in regards to changing husband's meds. I feel he needs a mood stabilizer. Waiting for Dr A to call will not be long. He is so good. Once he sees who it is that left the message, he will call back promptly. He always says in his clinical notes that husband is a "very interesting man". Ha.

As we start the Hospice program, please pray for us. This was a very heart and gut wrenching thing for me to do. We will see how it goes. It could be that husband does not need it at this time, but, I will leave that to the professionals. Like the lady said yesterday, it's not the end yet, but we all know it's coming.

Tuesday, September 6, 2011

Hospice & a movie

Ever since husband was diagnosed, I have been challenging myself. Not that this disease is challenging enough, but, I have decided to do more for me as well. I need it, otherwise, I feel as if I could loose my mind too.

I took myself to the movies yesterday. A lot of you may think no big deal. But baby steps for me. I so enjoyed sitting there, alone, watching a great movie. At first I felt awkward, funny how God works. There were several women who were alone there. I never noticed other people alone before, but, yesterday, God let me see that. As I was driving home, I felt fresher, the weather was wonderful. Then I came home.

Husband was a lttle pouty, started to rev up in a tamtrum. I sat him down, told him that I had a wonderful afternoon, that his behavior was not going to ruin my day. "Behave yourself", I said (rather firmly). He did. The rest of the night was quiet, husband a little out of sorts, but, behave he did. Husband, who has never liked going to the movies, said, "I'd like to go to the movies with you too". Uh, no. The whole idea of me going was to treat myself, to get away from him. I have to have some sort of outlet. Of course, I did not tell him these things, just nodded my head and said, "we'll see". That seemed to satisfy him.

Along with husband loosing the ability to do anything for himself, there is also a very selfish side of him coming out. It is hard to deal with. In my opinion, I think it's one of the hardest, on me. I can clean up after him, deal with answering the same question over & over, watching him like a hawk, picking him up after a fall, preparing myself for anything. But this selfishness is something that gets to me everytime.

In my support group, there are several men and women who have already lost their partners. They have been to battle, some had placed their loved one in a nursing facility. One might think this is cruel, but, after getting to know them, and going through this myself it makes sense. If you can afford it. By the time they are placed, they don't know anything anyways. I, on the other hand, will have to deal with this myself. He made me promise, on diagnosis day, that I would never put him in a home. Of course, he won't remember that, but I do. I think it may be harder on me. The guilt plus the guilty need to see him everyday, well, may drain me out. I will care for him at home.

It's almost time for Hospice, I know that. I will do some calling today. At the very least, have them on stand-by. They can be very helpful. Just the word, Hospice, sounds so, final. But it's what I need to do, now, today. Once again, I didn't sign up for this, God signed me up. He knows I can do it, I just need to open my mind and let it go.

So, a step in the right direction today. Today, I will reflect on my wonderful date with myself yesterday and deal with the here and now by calling Hospice. Ugh.

Monday, September 5, 2011

These are the days of my life......

Husband has been behaving very well the last few days. I absolutely love these times, with always a hint of a dark cloud hanging over me. I know that it will not last, and, when it hits, it's worse than before.

I am going to email Dr A today. I am going to request he put husband on some kind of mood relaxant. Also, the tremors he experienced at church on Sat night needs to be reported. There was another eipsode this morning. As he woke up, he stretched, and the tremors started in his legs. It lasts for only a few seconds, but tremors they are. A little scary, but expected.

He told me that he had been wearing the same jeans for the last 3 days. What? I do laundry every single Monday, but I am taking today off. So, I go to his dresser, lo and behold, there are his jeans, folded nicely, in his dresser. I show him his pants, he looks at me and just shrugs. A little later, I was looking at the pants he was wearing closely. They have not been worn for 3 days. They look fresh and clean.

These are the days of my life now. I've said it before, I'll say it again. With this disease, you can go anywhere. It sometimes reminds me of being in a fun house. It's that crazy at times. I have to be on my toes constantly, watching for signs of seizure activity (I believe they have started), checking him after a fall, showing no surprise when he has his "moments" and, just being there for him.

Today though, I am treating myself. I am taking myself on a date. I am going to the movies, alone, (never did this before) but, there's always a first. Looking forward to it. Jack will "dad sit". He's not thrilled, but said he would do it. Husband is not happy about me going to the movies. He does not like it when I leave him. But, I have to, for my sanity. I need this. Cannot wait!! Yay for me.

For now, husband has stabilized. Let's hope that when I get home this afternoon, we will not have to take a trip into the Land of Dementia. Don't wanna go just yet. Give me a few days, then we will take the dreaded journey.

Sunday, September 4, 2011

I'll take it!!

I didn't really have the pity party I wanted. Got so busy doing some heavy duty cleaning, I took it out on my kitchen floors, bathrooms and my home sparkles. It's really good therapy. I even had time to give myself a home pedicure!! I can't afford to get a professional one, so, I do it at home. May not look as fancy as some, but it looks OK to me.

We then went to church. Before we left, husband came to me and apologized for his bad behavior. I was stunned. I told him that I can only imagine what he is going through, but I am here for him, taking care of him, making sure he gets his meds, making Dr appointments, everything. He did seem sorry for what he put me through this past week. I know this phase will not last, but, I'll take it. For now.

At church, after singing, we were sitting down, and husband's legs gave out a big tremble. I looked up at him, he looked at me and sat down. I have never seen that before. Scared me at first. My thinking was he was going into a full blown seizure. It did stop, but left me a bit rattled.

Husband loves going to church. It was a good time to go. Left feeling re-fueled, ready for a new week.

Today I go to my support group. We meet the first sunday of each month. The founder of this group lives way up at the foothills. It's beautiful up there. You look out her windows, and there is the Sandia Mountains up against your face it seems. Today I will share with them the awful last two weeks. It's nice because some have been through it, they are the ones that nod their heads, some are just entering the "Just been diagnosed phase". With them, as they talk, I am one of those that nods her head. I remember the shock of realizing that I was right, he really did have the disease I had been researching for over a year. These meetings help me. I am not alone in this. Husband is the youngest to be stricken in my support group. They all were shocked when I told them his age.

On a lighter note, fall is coming, I can feel it in the air. Mornings are crisp now, but, by 2:00, it is hot. I can honestly say I am so over the heat. Enough. Soon, though, it will be cold.

Beginning a new week, a new month. Always new challenges. Today will be a good day. Husband has stabilized, my home is spotless, my feet look pretty good but, my mind is tired. My body is tired. These last few weeks have taken a toll on me. I have to go on, I have to be the strong one. Knowing this disease as I do, I will now get a breather. Husband will be OK for awhile. But, the next phase will come, soon enough. At least for now, I'll catch a break. I'll take it!!

Saturday, September 3, 2011

What a pity party I'll have.............

What can I say? This has been one heck of a week. Husband has continued to decline. His mood swings have been very hard to adjust to. You just don't know from one minute to the next what's going on with him.

Kristen went camping with her friend and friend's family. When they go camping, they go all out. So, husband asked her yesterday morning what were they sleeping in. She said tents. So, husband goes into garage to look for his tent. I know he was thinking I secretly gave it to Kristen to use. Comes back in the house and declares that someone has stolen his tent. I tell him it is in the spare bedroom closet. He tells me no, he "Put it right there on that shelf". Kristen goes to the closet, pulls the tent out, still in the box. I take it to husband as he's back in the garage. Explain to him that the camping equipment we have is in the spare closet. Does not register with him at all. He just didn't want Kristen to take it.

He told me yesterday for the thousandth time that I will be so happy when he's dead. Said I would probably dance on his grave, again. Those few words hurt more than I can say. I know it's the disease talking, but it still hurts all the same. I tell the kids when he "acts up" that it is the disease talking, to not take anything he says personally. But, when he says those words to me, I react the same way the kids do.

There are days like yesterday, I want to chuck it all and go away. I don't want to be around him. Today, I will clean house, trying to avoid him if possible. Today, he is talking as if it didn't happen at all. He doesn't remember what he said or did yesterday.

I don't know if I'm going to make it through to the end. I thought last night about when he's gone. Will I ever be happy again? Will I stop having the jitters? Will I be releived when he's gone? Will I ever feel "normal" again? What if, I think, I will be crazy when this is all over? This can go on for quite some time. Who knows?

I keep imagining Kristen camping. Waking up to the smell of the mountains, camp fires, coffee brewing on the camp stove, no plans for the day, relaxing, probably some fishing, looking forward to the camp fires at night, the quiet.

Today, I will think about what fun everyone is having this holiday weekend. I may even feel a little sorry for myself too. I earned it, I'll say. Done (still doing) my time. I didn't sign up for this.

Tomorrow will be another day. I'll pick myself up, brush myself off, and be fine. It's just today will be devoted to ME, what a lousy life I have now, what a cruel hand we've been dealt. After all, I've earned it.