Selfish

Part of this disease has turned my husband into one of the most selfish people I have ever known.

He is self-centered, thinks only of himself, full of self pity, will not share and "play nice". Folks, this is the #1 most irritating moments I have about this thing called, Dementia.

It's all about him, and him only. Please don't tell me, "well, Susie, he is sick you know". I, of all people know that. But, I am also human, and these feelings of anger, frustration and irritation are a very real part of my feelings.

We've had a few experiences these last few days of just how much this disease has progressed. Just when you begin to relax and enjoy what you have, this monster comes roaring back, bigger than before. Sometimes in the form of complete memory loss, sometimes in the form of poor pitiful me, sometimes in the form of "me, me and only me".

Ever watch that crazy show, "Wipeout?" I feel like those people at times, just bouncing and balancing. Sometimes you fall, sometimes you don"t.

I want to be "there" for him, but, it's hard when he is so involved in himself and this disease just keeps on destroying. Will I be able to do this? Am I that strong? How can I keep my sanity? How can I be there for all of us? I am having a moment today, a moment that will soon pass, however, when you are in the moment, it's awfully hard to see past.

Oh well, time, or should I say, this disease, continues to march on.

Miscellaneous

Just a post about my day in, day out life.

I transplanted two of my big plants yesterday. They are huge, it was a job, but this morning they look so happy. Leon tried to "help" and that is exhausting to me. I know he tries to help, but he only gets in the way. It always ends up with him getting mad at me and me being so frustrated. The end result was two big happy plants though.

My Jack told me he didn't want anything for Easter. First time in 38 years of raising childen that nothing was bought for a child. Wierd. Felt....different. Oh well.

I called my mom yesterday. I usually only call her on Sunday, but felt the need to talk to her yesterday. She sounds good. I so wish I had her nearer to me. Leon talks about her alot. Says he misses her.

For Easter dinner we are not having the traditional ham. I don't care for ham and it's not like were having a lot of people over for dinner. Just Marie, Burt and the kids. So, I am making my famous red chille enchiladas, beans & rice. Traditional New Mexico favorite. May not be healthy, but it's what for dinner.

Leon has started another downward spiral. It started on Friday. Has asked me the craziest questions. I tried not to look like, "what?" If you want to know what my life is like now, imagine you're in a Fun House. With every turn, you bump into walls, can't seem to find your way out, seem so turned around, confused, just when you think you've found your way, bam, another bump. Yes, that's what it's like now. A Fun House.

Only, It's not Fun.

After

I think about what is going to happen to me & Jack after Leon is gone. It could be 2-3 years or sooner. We just don't know. This disease is so unpredictable. This week, he seems fine. Of course the memory is not what it used to be, the blank look is still there, but he has seemed more of himself lately. It's been OK.

But, when he is gone, I will have to decide whether I want to continue living in this house or get a small apartment. My income will be reduced,(uh, alot) but it will probably only be me, so, what to do? I sure as heck don't want to go back to work. Those days are over. As I've said before, I would love to have someone publish this blog, then I would love to earn enough money to buy a small house: problem solved.

Tish wants me to live with them, Pat & Christine said to come live with them, the other kids want me with them, but, what about what I want? At this time, the idea of living alone sounds good to me. I have never lived alone, but, the solitude sounds so appealing to me. After years of raising children, the noises, the messes, the hassle, getting up each day in a quiet home, well, I think it's what I want. Who knows though, I may be very lonely living alone. I just think at this time, yeah, living alone is what I would prefer.

As time goes by, I may change my mind. I may want to have people around me who love me. I may need people around me. At least I have options.

When my Father died in 1985, my Mother went to live with my oldest brother and his wife. She lived with them for 13 years. She said it was wonderful.

I don't want to be the kind of Mother that burdens her children with her very presence. So, today, my choice is to live alone. My only hope is that financially, I will be able to do it.

So, here's to my future: a future filled with uncertainties, but a future nonetheless. At least I have a future. My husband doesn't.

Fresh Start?

The last few days have almost felt normal. It's been good. Jack has seemed more open to me and I like that.

When Leon spoke with Jack, he told him that he was so sorry he got this disease, that he was so sorry he would not see him grow up. He also told him that he was worried he would not know Jack, that he loves him now and always, that his mind may be gone, but to always remember how much he loves him.

Ok, enough of that, makes me want to cry and I don't want to.

My son Tyler proposed to his long time girlfriend here on Sunday night. Her family "stopped by", but it was a surprise to her; of course we knew ahead of time. As soon as Tyler got down on one knee, she burst into tears. She is a lovely girl, I am looking forward to having her in our family. Of course she's lovely, who could go wrong with a name like hers? It's Susie!!!!!

I am learning there's always hope in our futures. It may not be what we expect, but, after all is said and done, the hope comes creeping in and gives me purpose to see ahead. As I look out, I see that ugly word, "Dementia" smack dab in front of me. But, I am learning to look further, behind that ugly thing to see what's after that. I'll take it.

The calm after the storm

Things have calmed down around here. Leon seems OK as of yesterday. I talked with him, like a Mother would talk to her mis-behaved child. He understands (I hope) now that getting that angry only makes it worse for everyone. We had a good afternoon and evening and I cooked what he requested for dinner.

Leon is fighting this disease and making himself and everyone around him miserable. You can see the constant struggle he goes through in trying to hide his symptoms. It's hard to watch. My husband can barely walk, his left leg drags, his right leg is spastic, his arms flail out as he is walking, trying to balance and his upper torso bends to the right, making up for the loss of the left leg. It's not a pretty sight. His eyes are vacant with a glassy look to them. Remember the Stepford Wives and that "look" they had? That's my husband. In my husband's mind, he thinks no one knows what's wrong with him. He will listen to you talk, notice I said, Listen. It may look like he is having a conversation with someone, but he is only nodding his head, not giving any feedback on the conversation because he doesn't know how anymore. He watches TV with volume turned up quite loud. Not because he can't hear, he can't comprehend what they are saying because his brain doesn't understand what they are saying. The loud TV is most annoying. When his TV is finally turned off as I crawl into bed, the silence that follows is such a relief to my mind.

I told him that fighting this is not doing him any good, only making it worse, that anyone who sees him knows there is something wrong, get it out in the open, talk about it freely, that this monster of a disease is going to win anyways, make the best of it, use what you have now to your advantage. He "seemed" to understand what I was saying until I mentioned Jack, and how he wants his Dad to be more open with him about all of this. The look on his face told me he did understand what he was doing. So, he took Jack aside and talked with him. What a difference in my Jack. Jack knows, but his Father has never, not once, talked to him about this disease. I have. I saw a bond develope yesterday, a bond that was made from pure love for his child. My heart is full today. I am hoping this is a start for us, a start that is only going to end in death, but I'll take it.

I remember having 7 children, all natural. I remember Dr's and nurses telling me to not fight it, go with the pain. It hurts more if you fight it. The end result is you get a beautiful baby, that the pain was all worth it once you see your child. It's so true. Yes, this is different, the end result is not going to end in a beautiful experience, but, the memories will. The memories of a husband and father who was struck down with this horrible disease, but, who loved his family more than anything. A man who, while fishing up in the mountains, felt so close to God. The look on his face when he caught a big fish, the pride when his little boy would watch as his daddy cleaned the fish, and how after telling the story of catching the "big one" to friends & family, that fish got bigger and bigger each time he told it.

Any body got a Life Saver?

The past few days have tested me beyond anything I have ever known. Yesterday being the worst.

Leon has taken a turn for the worse. It all started with me letting him know that I needed a break and was taking yesterday morning to get some fresh air, breathe, relax, enjoy some time away from home and to feel not so suffocated. I just needed some time away. He got very angry. I had never seen him like this. So, I took him with me yesterday, so I could get out of the house. It's easier that way. You cannot reason with him.

And, I have been thinking. There may come a time when I can no longer do for him. The thought of putting him in a nursing home breaks my heart. Just thinking of what it may do to him and even worse, Jack, is heartbreaking. But, what's best for all of us?

I made a promise to him on the Day of Diagnosis that I would never put him in a home, but, that was then, this is now. I feel as if I am drowning. I am concerned, I am just so down today, I am scared, and, sad, very sad.

This is not good. I hate feeling this way. But, if what I experienced on Thursday and yesterday is a peek into what is to come, I may have no other choice. It was not pretty folks.

So today I will take each breath, move slowly, speak carefully, keep the household running on an even keel and hope today is better than the last few days.

Doom & Gloom?

When I began this post, I promised there would be some funny, lighthearted areas I would go to, along with updates on my husband's conditions. Reading back on some of my posts, I can see we haven't gone to the funny or lighthearted areas. They are there, but are getting lost in my memory because for the most part, we go to that "dark place", all too often.

I need to apologize for that. I am not a negative person, have a great sense of humor and love to make people laugh. However, when my husband wakes up and you have to answer questions like, "what is today?", "can we go somewhere today?", "do we have my cereal?", "did Jack already leave for school?", "when is the 3rd?", "what are you doing?", "what's for dinner tonight?", "what day is it?", "did you feed the dog?", "why is it windy outside?", "what day did you say it was?", get the picture? Then, all of my funny and lighthearted stories are replaced with the reality that my husband has turned into a child again, I no longer have a partner, he is gone, so I switch gears, put on my "Mommy" hat and let my day begin.

This morning, he was yelling for the dog in his sleep. I went into the room to check on him. He was still mumbling, but opened his eyes, as I looked at him I saw something. He wasn't "talking" in his sleep, he was hallucinating. I asked him if he was OK, he mumbled that he was confused, then laid back down. I sat in the living room, heard more mumblings. The dog got a little nervous and I thought, "what if he goes into a full blown episode? Do I call 911? What the hell do I do?" Luckily, he came out of it and is eating breakfast. He seems confused and weak. Don't know where today is going to go.

These are my scary moments. When is it going to go from bad to worse? Does it happen all of a sudden? Does it gradually get worse?

So, you see, I try to post funny stuff but when we to go that "dark place", the funny stuff gets lost. Then, my day is consumed with the reality of what my life is now.

Spring!!

Spring has come to the Land of Enchantment. Everything is turning green, mornings are still cold but by 10 or 11, it starts to warm up. I heard birds chirping this morning. I love this time of year. Re-birth. Nature. Fishing. Ah, yes, and the sneezing.

Last year this time, we were waiting on results from Leon's tests. There was one more test to do and we would get final diagnosis. I can remember that day last year like it was yesterday. When I checked him in at the front desk, they were especially nice to me. And I thought, "what a friendly place this hospital is." When they called his name, as I was going through the door, I glanced at the nurse as she looked at Leon and noticed something in her eyes. She smiled so sweetly at him and once again, I thought, "gosh, they are so nice here." We had been going to see this Neurologist since January of 2010 and it was mid April, but I just thought I had never noticed how friendly they actually were. They took us to a different room this time. As I entered the room, I looked at the door and it said, "Conference Room". My thought was, "oh good, no more poking and prodding, this is nice." Then, the Dr came in. As he sat down, he just looked at us, gave a big sigh, but as I look back now, it wasn't a sigh, it was a shudder. And then, those words, "I'm so sorry, what you have is Familial Frontal Lobe Denentia, very rare, and, terminal." He then looked at me and said, "you were right, you knew all along." And time seemed to stop. It was so quiet in that room, I heard voices in the hallway, talking, laughing, doors shutting, equipment moving, someone paging a Dr to the ER saying, "code blue", and all the while, Dr was telling us that Leon was going to die. My ears were roaring and I could actually hear the blood running through my body.

So, huh, I was right. Dementia. Final. Terminal. God, for once in my life, I really, really wanted to be wrong.

And here we are, one year later. Life is coming back to the Land of Enchantment, there is re-birth, the little creatures of the earth are coming out of their winter homes, my husband has Dementia and will die.

Today I know why they were so nice to me, that day of Diagnosis, all of them. They knew. It said on his chart. They knew what I already knew in my heart.

I will never, ever, look at Spring the same again.

New Week

Things are OK here, for now. We had a good weekend. I'm thankful for that. Uneventful and.....kind of boring. I'll take boring. I like boring. It's a good reprieve from the unexpected that I usually live with.

We had a few episodes of that "dark place" we go to, but was able to recover and go on. It was OK.

My brother in law, Omar, called me last night. We had a good talk, was good to talk to him. He wanted to talk with Leon and luckily, Leon was in the living room, so talk they did. Watching Leon talk on the phone was interesting. He had that blank stare, was looking all over the room as Omar was talking, smiling, would comment with a, "uh huh", or talk about random things, all the while with that blank look. It reminded me of talking to someone who was speaking a different language. You have no idea what they are saying, but, to be polite, you "act" like you understand. When we got off the phone, I asked him what they talked about and he said, "I don't know".

Funny. My life is just that. Not funny in a side splitting kind of funny, just...funny.

Leon spends his days in bed now. Not really in bed, but on the bed. Comes out to get water or a bite to eat, and back to the room. It's hard on him trying to walk without holding on to walls and furniture. So, it's easier on him to stay down. He doesn't eat much either.

So, onto a new week. Let the fun begin.

Week in Review

This week has been rough. Leon has seemed to stabilize somewhat, alot of memory issues this past week, but seemed more stabilized in alot of other areas. I hate this part though. It's kind of like watching a glass falling in slow motion. You know it's going to crash on the floor and there is nothing you can do about it. It looks to be in good shape as it's falling, but then, the crash. I associate that with what happens to him. He seems fine, then, crash, another part is gone.

Alot of people say, "he seems fine". But what they don't know is, when they are talking to him, he gets that glazed look in his eyes, but continues to nod and agree with them. He has no clue what they are talking about, but, to be polite, he nods in agreement. It's facinating and sad all at the same time.

This disease is so tricky and so, so unpredictable. Honestly, you just never know what to expect.

I have had a hard time this week. When I get this way, I get mad at myself because I don't ever want to feel or portray myself as a "feel sorry for me" kind of attitude. Those are the kind of people I avoid at all costs. And to think I was heading in that direction this week. No, I won't become one of them.

All I can do is make the best of this situation and walk the walk.

Let's hope for a better week to come and when the "crash" happens, (oh, trust me, it will happen), I will stand strong, swallow the lump in my throat, adjust to the change, be there for him, tell Jack that it's all in the progression and hold it all together. I have to, for the good of my family.

Dear Dementia:

Dear Dementia:

I hate you. You have taken a perfectly good man, a husband, father, hard working and loving human being and turned him into a complete stranger to all that had known the real Leon.

You have stripped him of his life. You have shortened his life. You have reduced him into a 2-4 year old brat. You have destroyed his legs, his body, his mind. You have taken away our future. You have stolen his physical and mental being. You have prevented him from being a father to his only child. You have taken away the sparkle in his eyes. You are mean, cruel and are moving through his brain like an out of control wild fire. Every morning, when he wakes up, I see more of what you destroyed in his sleep.

When you are done doing your "work", my husband will wake up to see the face of God. No longer will you be able to do anything more to him. Your job will be done. He will be able to see his mother, uncles and grandfather. You destroyed them also with your works.

Because of you, Leon's wife, son, step children and grandchildren will be left without him. His wife will no longer have her partner, his son will no longer have his dad, the other kids will no longer be able to take him fishing and the babies will no longer have their Pappa.

One day, when his body cannot take anymore of your attacks, his Heavenly Father will welcome him into His arms and say, "Well done my good and faithful servant". You won't be able to hurt him any more.

But, I will hate you, despise you, spit on you and curse you until the day I die.

Sincerely,

Surviving Spouse

Digging Deep

Leon has been in a particular funky mood all week. He seems to want to start a fight with me and when I don't respond with a smart remark, it only makes it worse. My only recourse is to ignore him. Then, I feel guilty about ignoring him. This man makes me feel guilty about everything. If I run an errand with Kristen, I get a cold shoulder when I get home. If we watch a program that we both like, he will come out of the bedroom and glare at me. I know something is blowing in the wind, I can see it coming and the bad thing about it is, there is nothing I can do to stop it.

This crappy disease has robbed, stripped and destroyed our lives. We are not normal. My son Jack should not have to see this. He is such a "man" now, he takes it all in stride. But, I wonder, does he cry at night, all alone in his bedroom? Does he long for his Daddy that once was? Does he long for the Saturday mornings when he was 4,5 and 6 yrs old and they would get Zebra Cakes, sit in his Daddy's truck and feed the birds? Jack used to call them "pigets", instead of Pigeons. My chest is heavy with all that my son, my baby, has lost. And today I can finally say, that's not fair to my Jackie boy.

Also, I can finally admit that at times, I resent Leon. I know he can't help it, the disease has taken over his mind and body, but I have to be truthful to myself. I resent him. Is that normal? I don't know.

I am at a point in my life where I should be looking forward to the "Golden Years". Instead, I am planning a funeral for my husband, wondering where I am to live, how am I going to make it financially, should I move in with one of my kids or should I get a small apartment for just me? If so, how can I afford to pay rent? Ah, I hate days like this, absolutely hate it.

I am going to have to dig deep today and find myself again. I need me back, the strong one, the one who just takes these train wrecks head on, the one who says, "oh well, it is what it is", the one who finds comfort and comforts all.

Today if you're looking for me, I will be in the Department labeled, "Familial Frontal Dementia".

News from my life

I took my daughter, Kristen, to get her Driver's License (her first, I know, I know, 'bout time) yesterday. Of course, nothing goes smooth in my life. As the examiner was doing a vehicle inspection on my car, one of the brake lights was out. Wouldn't do the test until I fixed it. Now, I know nothing about fixing that and Leon? Um, as I said, I know nothing about fixing that. I called the Dealership, they said to bring it on in. So, off we went. Luckily, they like me down there and fixed it, (was just a bulb), as I went to pay, thinking, "great, how much are they gonna charge me for labor", they said, "no charge, go take that girl for her driver's test". I was so relieved. Most of you are thinking, gee, Sue, it was just a bulb, but it's the little things folks, ok? Kristen passed with flying colors. The only thing they said was that she drove a little too fast, wonder where she got that from?

Of course, I had to take Leon with me. That was fun. He kept asking me how they run the DMV, why is it taking so long, why are other people there, what if she got in an accident while taking the test, is she going to buy a car today, how am I going to pay for fixing the brake light, these chairs are uncomfortable, my back hurts, my legs hurt, it's hot outside, Bessie (our dog) is probably wondering where we are at, what day is it, what time is it, I'm hungry. Get it? Fun.

Jack has had testing all week. It was only for the 11th grades. They want to see if they are going to graduate next year. Jack told me he had his Physics test. They had 90 minutes to do it and he finished it in 25 minutes. Must be nice. It would take me 90 minutes to figure out just what the hell Physics is!!

I am ok. My back seems to have let up some. Still hurts, but not as bad as last week. I have good minutes and bad minutes. Like I have said before, you never know what's going to happen. It's good, it's bad, it's good, it's bad, it's good, it's bad,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,. So far, it's ok. Leon woke up early, ugh, but didn't seem too off.

I would love to get a Yoga DVD. Something for me only for early in the morning. I think it would help. My only problem is, if Leon wakes up early, well, he would want to watch me and ask questions all during the exercise. I have thought about walking early in the morning, but he would want to go with me or call me asking me where I was. In my life, there is no escape.

When Leon is sleeping and I have had a particular bad day with him, I look at him and think, "there is no escape for him either". And my heart hurts.

Another post?

Just had to share this picture. We took Leon camping last August. Christine was taking pictures of everyone. When we looked at this picture it was amazing. In all of the other pictures there were no "spots" like this one.

These spots are Orbs, or, Spirits. These Spirits are all around him, protecting him, I'd like to think. Notice the streak of bright light coming down behind him. All are circling his upper body, mainly the head.

Some skeptics may say it was just the lighting, well, believe what you want. This is God speaking and sending his Angels to watch over him.

When he is gone I will have this picture and know where he went.

If things were different

If things were different, I would probably still be working.

If things were different, Leon would still be working.

If things were different, my son would have a healthy Dad.

If things were different, Leon's Mother would still be alive, cherishing her only grandchild.

If things were different, we would be looking forward to our son's graduation next year.

If things were different, we would be planning a future with, finally, no children invloved.

If things were different, I wouldn't be planning his funeral.

If things were different, I wouldn't have to make all the decisions.

But, if things were different, I would be different.

Been awhile..................

No, I haven't left the country for some long awaited vacation to the South of France, nor have I been arrested or kidnapped. Life is just happening and I just did not have time to actually sit and post.

Leon's cough seems to have gotten better, although still coughing. Appetite is just not there, but I've noticed his appetite declining over the past few months. He has lost more weight and pants hang on him. He has been, how do I say it, quite difficult this past week. If I could've, I would've given him a good spanking and sent him for a time out for about, uh, maybe a week? He is exhausting. I know he can't help it, but I can only take so much before I blow a fuse. He has been pouting alot and saying some really not sonice things to us. We do ignore it, but sometimes it just gets to me. And it's only going to get worse.

We did get out the walker. I adjusted it to his height and what a difference in his walking. He used it once when we went out. It's sitting in the same place he parked it last Wednesday. He is so stubborn. Guess it's going to take him falling and hurting himself to make him understand that the cane he is using is not heling at all anymore.

I have been spring cleaning. Cleaned out my dresser and master bedroom closet. I have given, to date, 9 bags to goodwill. And my closet is still full of clothes. Ugh. I got rid of all my work clothes, shoes and jackets. I kept a few, for special occassions, but the rest somebody else can use. Feels good to "shed".

Today is laundry day. It has warmed up enough for me to start using the clothes line again. Not hot, but with the wind they will dry on the line. Saves on my electricity bill and the smell, oh, that smell. Nothing better.

So, for this week, all I can hope for is a good week. I hope Leon will be more reasonable, but, who am I fooling? It's only getting worse. I am finding myself struggling with all of this, I need the strength to take care of him and I need to find it again. My back has been aching and know that it is the stress I am under. I just want it to go away, all of it. In cleaning out my closet, I seem to have lost my "big girl pants". Need to find them again and put them on so I can deal with this disease called Dementia.