The Big D is Back,Living with Depression

Chaos,that is how my brain,my emotions and heart feel.The past few days,all i want to do is sleep.I just spent some time trying to clean up my moms guest room,and of course because of my damn knee,my arthritis I have to take lots of breaks.Than I ask myself,I am doing this because I don't want to hear any shit from mom.She is a neat freak,a cleanliness nut.I am not.Hubby and I tried to talk about money.Dead End.He insists on being 100 percent truthful about his business income tax.We are broke,we just barely have enough money,and he wants to just give it away.
My house is falling apart.I don't want luxury ,I just want basic maintenance.I feel like screaming!

I will try and write more later,my brain hurts right now....

Starting a New Blog

Hello everyone.I finally can think,and have gotten over mostly the exhaustion from the U.Penn Journey.The Good News is,Paul does not have frontotemporal dementia.The bad news is,he does have brain shrinkage,and some deficits,and it could turn into dementia down the road.Now we both have to work on rebuilding this shattered marriage.The Good News,We both seem to want the same thing for our marriage.The Bad....i feel like a shell of a woman,a person.I feel like I am drifting ,lost ,very lost at sea.
So,either I will figure out how to change the title of this blog,or create a totally new one.....I will keep you posted.
I missed writing on this blog,and I missed all of you,my soul sisters across the web...Peace

High Anxiety!

I have been running around all morning,getting ready for the big trip tomorrow.Lots of dog stuff to bring in the car to the kennel,getting 2 big dogs in the car,the 2- minute car trip,getting them out of the car,into the kennel.Did I tell you already I hate leaving the dogs at the kennel??!!!
I have learned,through this Dementia thing,that my patience level is low.I have been under so much stress for such a long time,I can't tolerate much stress anymore.I need lots of patience with hubby now.I wonder how I make it through each day.When people say,One day at a time,how about one minute at a time??
I hate long car rides,but I have to go .Husband stresses me out just being at home now,I have to have the long car ride with someone who is impaired.Oh well,I am glad the Dr. is going to see him,and it will be over with before I know it.Peace....

Countdown to Wednesday

This may be the last blog until next week.I was originally going to take hubby to Hershey U.Penn ,than he got mad and told me he didn't want me to go.Dr,emailed me this am,and said I have to go.I knew that it was crucial for me to be there,since hubby does not think there is anything wrong with him.Anyway,so glad I got the dogs their kennel cough spray and their rabies shots.Now I have them ready to go.Called the kennel back,the lady must think I am nuts!So will be dropping 2 dogs off there tomorrow afternoon.We leave Wed am at 6.Paul's first appt is Thursday 10:30 am.According to a lady from my support board,Paul will be testing most of 2 days.So I think,we will be heading back down here on Saturday,but am not sure.
Anyway....I have to leave my comfort zone once again,which hasn't been too much of a comfort zone anyway,with the way hubby is acting.
I hate leaving my dogs at the kennel,but this appt is so crucial it is not funny.I know they will survive,but they are older,and I still hate it.

Anyway,if I don't post tomorrow,I will surely post when I get back and update you on the latest in the diagnosis of Paul.Peace

Lazy Days and Wind!

It is 8:48 EST,I basically laid around all day,in between chores of course.Hubby was home most of the day,and didn't talk much,and was blank,but at least he wasn;'t mean.It is so weird to have your husband here,but not really"here"It is lonely,but I best get used to it,it isn't going to get any better,it will get worse.
I am happy Paul decided he didn't want me to go to U.Penn with him.I can't take any more stress right now.My knee and legs have had it from overdoing it since my surgery in December.

Youngest son moved out this weekend.Of course he still has a crap load of stuff here.I am happy though,he has his own place,but it is just down the road.
Youngest son can drive me crazy,but I love him,he will always be my baby.My oldest son comes home to SC tomorrow to see his wife and daughter,after being at my ex husband's funeral.This whole week felt surreal.Actually my whole life has felt surreal.
Hubby also has been sleeping most of the day,actually 99 percent of the day.That is what he does mostly now when he is home.Sleeps,eats snacks,sleeps some more,drives me nuts,sleeps...you get the pictures.
I just finished 2 Vampire books,by a new author I discovered.I have the 3rd one here,but I started reading something spiritual,mind you,not religious,spiritual.So far I read 5 chapters.
I have been playing a lot of handheld yahtzee to keep me from going insane.
LOL It is 36 degrees here,and I have my desk fan on from hot flashes!I know there are lots of other women out there with the same problem.
I have been trying to eat better again,which I managed to do for a year and a half,and than I went crazy when all the crap with hubby went down.I am not being crazy,but trying to make better choices.I have no desire to starve myself.
All my days,seem to run into each other,since I no longer have a spouse.Well you know what I mean,his brain is gone.
Whether I want it or not,my life has changed forever,and I best deal with it.Peace

The Waiting Game

High anxiety.That is how I feel these days.U.Penn called today,and got Paul preregistered.I am glad,on the other hand,scared.If this new Doc doesn't find anything,then I am living with a psychopath and I have to make plans.Plans for my future that don't include him.
I have been really hurting about my middle 2 sons.I have though back over the years.There were many times where things happened between me and Paul ,and Paul told the boys bad things about me,they had no business knowing.So I am very angry at Paul right now.Of course ,that is not the only reason.
It is a huge reason though.I have put up with so much crap from him for 23 years,they act like he was a saint.I taught him how to be a better parent.When I met him,and say how he treated his 2 kids from his first marriage,I was scared.I was also trapped.Ex left me,no money,no place to go.So,I walk right into another fire.Maybe I am so damaged from my baggage,and I wanted everything to be good.I prayed it would be good,I tried to make it good.I can't make a relationship by myself.It takes two.
Even though I know,besides my faults,I was a damn good wife to him,and mother to my sons,it hurts me to my soul to be treated like a stranger to my husband,and by my 2 middle sons.
I just can't let it go.I try,but I can't.
Even though Paul is alive in some ways,the Paul I fell in love with is gone.The person who replaced him is horrible.Evil,nasty,viscious and cruel and very spiteful.
If it wasn't for my cats and dogs,I would have been gone already.This is killing me,my spirit,heart and soul.I can't take it much longer.I want peace ,peace ,peace.I don't think I will ever have it.
BTW...I was supposed to go to Hershey U.Penn with him,but he doesn't want me to go,and frankly between my knee surgery,the grandaughters birth,the day to day living with Satan.I have nothing left.I am utterly exhausted.This is the end of the road.If this Doc finds nothing wrong,husband said he will go to no more Doctors.

One more thing to add

I forgot to mention,Satan aka Paul told my sons terrible things about me at various times when they were growing up.Things that should have been between me and him.So I partially blame him for the estrangement of my 3 sons.I hate you ,son of a bitch!

When Love Dies,And My Marriage is Over

I feel dead inside.I have reached the point of no return with my "marriage"it is not really a marriage ,it is in legal terms only.My marriage ended a long time ago.Just took me so friggin long to see.
Two nights ago,Satan aka hubby said the most cruel and hurtful things to me.I will never forget them,as they stabbed me in my already bleeding heart.He told me he is the way he is because he had to deal with my depression all these years.That I am the reason he is stressed and miserable.
He may as well have taken a dagger to my heart.I sat there sobbing,and of course because something is really wrong with his brain,no emotion,no reaction.
Pitiful,my life is pitiful.
Even though Paul has gotten much much worse,I have been flashing back to the very beginning of our marriage.It made Paul feel powerful and in control,because I was so needy and desperate.As long as I was dealing with my baggage,he felt like a man.He certainly came into the relationship with his own fucking baggage.He was a crack addict when I met him,and I didn't know.My ex husband had a coke problem,and I don't mean Coca-Cola either.However with Paul,instead of acting like speed with him,it mellowed him out.I went through hell in those years.
He has never been an easy person to live with.Whenever we have had problems,arguments,he has always blamed me for everything,my family blamed me for everything,when I was growing up,and my 2 middle sons and my youngest blame me as well.
Folks I am fed up,I have absolutely had it .No one else is going to shit on me,and me just take it.
I am taking my life back.I may be poor,may be penniless,but at least i will have my dignity!

I have also decided the 2 of the "friends" in my life are going to be no longer.They bring me down,make me feel worse about myself.Good Bye,you are dragging me down,and you no longer have a place in my life.I would rather be alone,than feel like shit whenever I talk to you or see you.
I am going to start going to plays,concerts,lectures,etc...I am going to create my own life,on my terms.If anyone doesn't like it,I don't care.
It is long overdue.
From my biological father,to my ex husband,to other men,and therapists and Doctors.YOu have shit on this chick for the last time.
We women are raised that it is not lady like to get angry,.Bull CRAP!We are entitled to our emotions the same as you shit head men,whoever you may be.
I am going to treat myself to the movies,breakfast,lunch,whatever.I don't need a man to complete my life.I have put off my needs,wants and desires for everyone else.It is my turn baby,at 46 I am going to take care of me,think of what I want and need for my well being.
This is my Declaration of Independence World!Do not Fuck with me,ya hear???I am no doormat,I am no idiot.Just because I have depression ,and I am not perfect,gives no one the right to shit on me.
I am going to live today!Peace....

Early Morning Shock

I got a phone call 6:30 this am from my oldest son.My ex husband,his father died at 48 years old,while undergoing a routine hernia operation.There was no love lost between me and his father.However,I do feel sadness for my 3 oldest sons.The weren't super close to their dad,but in his own warped way,I am sure he loved them.
My oldest son was so torn up,because finally he gets to bring his baby girl home from the hospital today,and now he has to go to a funeral.

It is amazing how life's big twists can bring you back to an earlier time.I remember being crazy madly in love with this man,than after he left me with 3 toddlers and no money,such hatred.
Over the years,I wouldn't say I hated him,but I couldn't stand to be in his company either.Had to go through 3 weddings,with him there.He was pleasant,but I hated seeing him.
It amazes me,that now they lost their biological father,and their Step dad,Paulie is gone to them also because of the dementia.Of course it will kill him eventually.I think I am still in shock from this am's phone call.I just got back from the vet(big ordeal)2 big dogs.Now they will be able to go to the kennel,while I take hubby to UPenn.
I was very very sad when I went to bed.I can't believe how uncomfortable I feel in my own home when Paul is home.There is so much silence now.It is like having someone already dead but their body still there.Very weird feeling.I do feel bad for my exes wife too.It was his third marriage,and they have only been married 2 years.Well I think that is all for right now.Peace

My life in the madhouse

The past week or so,Paul aka Satan,has been making all kinds of weird noises and vocalizations.Tonight he was mostly silent upon coming home from work,than he started singing nonsense in a falsetto voice.It is driving me mad!

Lately he mimics the birds outside,the cats,the tv,the appliances.He talks to himself all the time,and no I am not talking about what we all do ladies .I mean he really talks to himself.This is the most bizarre disease I have ever seen.I can't wait until he is mute.I know sounds terrible,but on my blog I aim to keep it real.So being real,I do not want any of this,I do not feel anything towards hubby anymore.Living like this 4-5 years is damaging,it has damaged my heart,my soul,and a lot of my love.

Whoever is out there and is living with a spouse with frontotemporal dementia,or some other kind,you know what I mean?
I am awaiting the Dr. in Hershey,I had Paul's records faxed today.I need to know asap,so I can get a cheap hotel room,while we are there.I want closure,I want a Dr. to listen to me,and do the right tests.This is the end of the Medical road for us,Paul said,if this guy says nothing is wrong,that is that.
So a lot is hinging on this diagnostic testing.Of course my sanity for one thing.I feel as if I have been holding on by a mere thread.
It is so weird to have this man ,who is legally my husband,not share anything anymore.We always talked about the kids,now he never mentions our 4 sons.He used to call me every morning,just to hear my voice,now he rarely calls,and if he does,he is pretty unintelligable on the phone,sometimes he j ust stops talking and there is silence.
My heart hurts because of Donovan.My precious Donovan,who I will never know.My family is my life,has been my life,and 2 have 2 sons so cold,I can't understand it.It is not like they ever said,Hey mom I am pissed off at you because of.........They haven't told me anything.I can handle the truth,I can't handle cruelty,especially at the hands of my 2 middle sons.
I am in isolation mode this week,it is my way of protecting myself from all the Shitheads out there,and boy there are plenty.So many hurtful things said to me over the past few years,few months,few weeks.So I go inside my own little cocoon,and stay by myself .I need to shut the crazy world out for a few days.
It is nighttime,which means lonliness.At least it was a lovely day,and I got to sit on the porch a lot with the dogs.Nice breeze,quiet.
Youngest son moves out this weekend.He is back to denial about his dad.So that means I am the baddie all over again.
Time for a cigarette...Peace

So blue,So lonely,So down

Weekends used to be so nice,that was before Dementia took over my hubbies brain.Now they are pure Hell.I hate them.My physical health is for sure being effected by his illness,and all the shit I have to put up with.While I am happy to take him to the Dr.in Hershey,Car rides are pure hell with this man.It will be just tons more stress,but I have to do it.

I have been so stressed out lately,my hot flashes have come back with a vengeance.I am already hot natured,so I feel like a human bbq pit.I am at my pc with a fan blowing on my face,and it is only 52 degrees out.

I am really bummed about my 2 middle sons,how they don't seem to care,it really gets to me,I try not to let it,but I can't help it.
My hound dog Gracie who is almost 9 and a half is showing signs of old age,I am noticing little things that are going wrong.My cat Spanky is the oldest cat right now,and ever since Cato died a few months back,he is not the same.He lost weight,he has a cold,he is lethargic.He can't jump as well.I know it broke his heart when Cato went.They were like Salt and Pepper.Destiny my calico who is around 8 has some kind of weird skin thing going on.I take her and Spanky to the vet this week.
I am happy to say my turtle is doing great.She got real sick several months back,and I really though I was going to lose her.I even bought turtle vites off the net,and a new heat lamp.She is doing amazing.I am so happy.
Well my left knee is doing much better,but I notice the past few days,my right knee acting up.I know there is a direct link to depression and body aches.I do have arthritis and fibro,so who knows what is making it hurt.
I woke up from my nap today with a panic attack.I hate when that happens.I feel like a am standing on a deserted island all by myself,with no boat in sight.Peace

The Black Dog Returns,I am depressed

I wanted to post last night,just didn't have it in me.I felt really bad yesterday,physically and emotionally.The night before last I tripped and fell,and really hurt myself.I didn't break anything,but I fell on the surgery knee,and my hands with the arthritis are killing me.Nothing new in the Dementia front,except I just can't stand living with my husband this way.It is like being with a 53 year old toddler.
I woke up this am,to a mess in the kitchen,made my husband because he was up all night.The garbage was overflowing,garbage all over.I have enough jobs in the am to do with the cats and dogs and turtle.
Got a call from one of my middle sons,who has kept me away from grandson.I was so sad when I got off the phone.Number one,I could tell by his tone,that he doesn't believe me about his step dad.He wasn't mean,but he wasn't warm either.I raised my sons with lots of love and affection.I can't stand being around cold,robotic people.I can't believe that 2 of my sons are so cold.
Satan just left for mens prayer,what a joke,he is so mean,nasty,cruel,he is everything opposite of how Jesus is.I know it is the Dementia,but at this point,I don't care.
I am so lonely,I am tired of people not believing me about hubbies Dementia.
I have a super busy week coming up,I need to get the 2 dogs Kennel Cough for boarding them when I go to Hershey-UPenn with hubby the week of March 10th.I have 2 sick cats,who I am bringing to the vet this week.I have to contact Duke in NC to get hubbies records faxed to Dr.E in PA.I have to talk with my best bud about cat and turtle care while I am gone.
I have to pay bills,make phone calls,go grocery shopping(yuck),get my rx's refilled,and on and on.
My kitchen floor looks like a mudroom,and I just don't have it in me to mop it.I hate when I feel like this.
Sunday March 9th I get a measly hour or so with my 2 year old grandson.I have to drive 30 minutes to see him,because they won't bring him to our home.I will do it to be with Donovan,but his parents make me angry.
Than the week after we go to PA,I am leaving for a week in SC to spend some good time with new grandaughter Katrina Grace and my son Tom and his super wife Kristin.I am not a big fan of driving long distances,but you do what you gotta do.
My youngest son has been a real snot lately.Last night he upset me,he moves out next weekend,Hooray!He has so much crap in his room upstairs,I can't wait for the room to be empty,so I can someday transform it into a nice sitting room/aka guest room.
I am disgusted with myself and my eating habits.I know how to eat right,I know all about healthy foods,however when I am depressed or sad,I just don't eat right.All my clothing is tight again,it was so nice before all this for the first time in years,to have my clothing baggy.
I don't know what to say to people anymore.When I feel like this I isolate myself.So many people don't know what to say to me,or they say something cruel,or well meaning but stupid,which makes me feel worse.
I have so much to do today,but i don't feel like doing anything but showering and reading.
I check in on my online support group for FTD daily,many times daily.It is my one sanity in my insane world with hubby.Those people truly are the only ones that understand my plight.
I feel bad that we all have to go through this.Peace

Finally Good News!

I heard from the FTD Dr. at U.Penn today,he asked if we could come the week of March 10th??Are you kidding,this is an answer to my prayers.Finally after all the perserverence,pain,agony,grief,anger.Someone has listened to me in the medical community!I need the official diagnosis,need it to prove to Paul that he has dementia,need it for legal reasons.Need it to show people that Hey,his wife actually does know what she is talking about.I am relieved.
It is cold here tonight,we have a very cold wind blowing.Husband is watching his tv marathon.I apologized to him today,even though I wasn't wrong,to calm him down.He is psycho,you have to be one step ahead. Now I have to take 2 dogs to the vet for Bordatella ,kennel cough.Waiting for the lady at the kennel to call me back.Next I need to make budget hotel arrangements,my best bud already said she would check in on cats,and I need to ask about the turtle.
I also decided today,i want to go down and spend Easter with my new grandaughter and son and daughter in love,without my mom.No offense to her,but I want to bond with this grandbaby,I got gipped with my grandson,and when mom is around,everything is about her.So even though she may be offended,tough shit.It is time for me...Peace

Out into the real world

I just got back from breakfast out with a friend.It felt good to be out and about,the friend who took me,it was a late birthday present,adds to my stress levels.She lives in a little tiny "Christian"world.It wasn't too bad,but I can only handle small amounts of time with her.Tomorrow on the other hand,I meet my best bud Christina for some pampering at the salon.She is getting a cut,me a color.I haven't had my hair colored in like 8 months.It was good to leave the house early this am before Satan got up.I was gone and out of the house,didn't have to see him,or feel the huge amount of tension.At least he is at work with son today,I will take any peace I can get.
The friend Betty asked me this am,well if someone were to take Paul into the thier house,would you be ok with that.I was like,Take him,get him out of my house.I don't care.I can't stand living with him.I think she was shocked,but i don't care.
My son sent some more "Katrina"pictures this am.Oh she is so adorable.I can't believe I have a grandaughter,it still seems surreal.
I have been avoiding my mom,I am angry with her.Of course I can't tell her that.She get's very defensive,even if I word it nicely.So the only way I can deal with it,is to limit my conversations with her until I get a grip.
The sun is shining here today,but my world seems gray.It is 43 degrees in southern VA.
I called the Dr. From U.Penn this am,got a voicemail.Left a message,hopefully someone will call me.I am tired of making a ton of calls,filling out mountains of paperwork,dealing with all this shit,but I have to,I have to keep going.Peace

Books on Dementia

Over the past several months,I have been reading anything on Dementia I can find.Some of the books have been good,the best one I have read so far,about a wife's day to day living with a demented crazy husband is called "A Glass Full of Tears" by June Lund Shiplett.I ordered it used off of Amazon.I started it last night,and I am almost done.She articulates how horrible it is to live with a person with Dementia,and what it does to the wife.I highly recommend it.I am also reading Mermaid in the Basement,by Michael Lee West.That one I am not getting through so fast.It is fiction that takes place in the South.
I can't concentrate very well,so I have been playing handheld Yahtzee in between chores,and before I go to bed.
Paul came home from work,went straight upstairs.I am sure once I go to bed,he will be up and eating nonstop until the wee hours of the morning.At least he isn't irritating me,or yelling,or giving me 20 questions.I read the book a month ago,"The 36 hour day",it got great reviews,I didn't care for it.Didn't tell me anything I didn't know and it is fine if you have money and can pretty much plan what your life will be like.Not for poor folk like me and lots of others.I didn't even finish it.
I feel the tension in the house,in myself.My heart is racing.My chest feels tight.My head hurts,my legs hurt,and my heart hurts bad.
I had a nice conversation with my best bud today and she is the only one friend I have in person who lets me vent.Thanks Christina,I love you!
Life isn't fun anymore.I have lost hope.I was happy to get an update on my new grandaughter tonight,Daddy was very happy to have held her a lot today.I hope when I lay down in my bed tonight,my mind doesn't race,and sleep comes quickly.Nights are very lonely.Peace

Depressed,Discouraged,and Angry

I woke up feeling very depressed and discouraged.Of course my animals keep me from laying in bed for hours.Paul didn't speak one word to me this morning.I am very thankful,but the tension in the house is palpable,and raw.
He is working with son today.That means at least half a day of some kind of peace,and space.
I can't believe that this morning,my mother actually asked if Paul had bi-polar.I wanted to scream,stomp,yell.I calmly told her the details,the facts,etc...Than she proceeded to tell me to lay off the diet coke and wine.I almost laughed at her.This was only the second time in maybe 6 months I had a little wine mixed in with my diet coke.She said I am worried about you becoming an alcholic,ROFLMAO.So sad,well meaning people who have no fucking clue.If I drink any alcohol in a one year period it is usually no more than 3 times .I hardly think that qualifies me as an alcoholic!.
It really hurts deep when your own family doubts your husband's illness.I got downright indignant with mom and told her,I don't need a diagnosis to know there is something wrong with husband's brain.Of course I am the only one dealing with this fulltime.
The way I feel today,Everyone else who doesn't understand ,well meaning or not,can go to Hell.
I am sick of this.
I think 23 years with this man qualifies me to know him better than anyone.People are so fucking stupid.
Even family,sometimes especially family.
Son Brian who has kept Donovan from my life ,emailed me the other day to invite me to lunch with him,his wife,my grandson and my other son Daniel,who hasn't spoken to me since he was mean and viscious to me the night before my knee surgery.Of course I am going to go,I want to see my grandson.I have no interest in seeing son Dan and his stupid wife.
Oh well,as usual I will eat crow to please everyone else.
What people don't understand is,my marriage ended 4 years ago,when Paul started really showing symptoms of Frontotemporal dementia.So legally I am married,but not in any other way.
I would rather live alone.Just my dogs,cats,turtle and me.
You know what Mom,if I want a fucking diet coke with a little wine mixed in,that is my choice,I am 46,and I will do whatever I damn well please to try and deal with this horrible life I have right now.I would gladly send husband aka Satan to any relative that wants the burden,any church buddies of his.Of course not,people want to preach to me,lecture me,give me positive thinking tips.Hey mom,wanna take Paulie off my hands for a month.Go ahead.Of course you won't,that is the hard part.It is easier to offer advice.Go to Hell world,Go to Hell.

Back From Sumter South Carolina!

I don't know how well I will be able to express myself tonight.I arrived home Sunday afternoon,after a 6 hour drive.I have a precious new grandaughter,Katrina Grace.She arrived 5 weeks early,weighing in at 5 pounds 11 oz.She had some complications,was rushed to Infant intensive care,but she is doing really well now.I got to be in the delivery room,which was a very pleasant surprise.Daughter in law originally wanted just her and my son Tom.When labor started she wanted me in there.I have 2 grandbabies now,and was lucky enough to witness and participate in both their births.
When I got home ,both giant water bowls for the dogs and cats were bone dry.This was a big worry when I left.Of course Satan,oops I mean "husband" assured me all was well.Then again,he has Dementia.
It was bittersweet not to be able to share the joy like we used to over family events,I got over it pretty quickly though,as the time there was hectic,and I was sleep deprived,as was everyone else.
I am thankful Katrina will be coming home soon,I know my son and daughter in love will be too.

Of course my joy was not to be,as Satan reared his ugly head around 5 pm,sundowning time in Dementia terms.Normally I am very patient,I was running on fumes,and when he started in on me I freaked out.Which of course makes someone with dementia lots worse.
He came home from work with son tonight,and started in on me again tonight.Tonight I really lost it.I screamed and cursed him,he started to threaten me,he put his finger on me,and said what are you going to do.I told him,you touch me ,I call the cops,they drag your damn ass away.I told him to get the fuck out of my face and leave me alone.Of course,being that he has dementia,he thinks he is fine,and I am the one with the problem.This only adds to my anger and frustration,because according to him,I am always wrong and he is fine.
Tonight,I sent like the 5th email to the Dr. at U.Penn who already agreed to get Paul in to his program,still haven't heard back since the original reply Feb 14th.
I am burned out,tired,angry ,very angry.I who am not a drinker of alcohol by any means,just poured some red wine in my diet coke.Of course the psycho crazy hubby stopped 2 of his meds as well,which were anti psychotics and mood stabalizers.So on one hand,I am overjoyed about the new life in our family,a girl after years and years of boys.On the other hand,I am trying to hold it together,handle everything,including Paul;s stuff,yadayada.Honest to God,if it weren't for my online FTD support group,I do not know what I would do.They have been invaluable.They give me a reality check.No one else on this earth ,other than them,truly understand what I am going through.I feel really alone.I am mad a certain people in our lives who either stay away,or don't seem to give a shit.
I am planning a trip down to SC for Easter,with my mom,my brother from California,my youngest son Nick.I plan to board the dogs this time,so I don't have to worry about them.My best friend will be looking in on the cats.I feel as if I am suffocating in my own home.I hate that feeling,this home should be my sanctuary,it is now my prison,when Paul is home.
Peace

My Grandaughter is on her way!Yehaaaaaa

Just a quick blog before I leave for South Carolina.My oldest son called me a little while ago and my daughter in law Kristin;s water broke,and she is 3 cm dilated.I am awaiting the next call to tell me what hospital to go to and the directions.I am so excited I cannot even describe it.Katrina Grace your Mimi is coming.I love you and I can't wait to see you.Peace.....
Won't be blogging for a day or so will be away

PS...I forgot to tell you....

I almost forgot,the 78 pounds it took me so damn long to lose,25 of them have found their way back to my body,just thought I would share...Peace

Things that Piss me off Part 2

Greetings ...now that I have finally showered,it is only 4:17 in the afternoon.I thought I would continue things that piss me off.The topic now is going to be the unbelievable pressure on women to look and be perfect.
I think it is very important to eat healthy foods,I also believe in balance.Did you ever wonder why there are so many billions of diets popping up ???!!!it is big business,and guess what,Diets don't work!Healthy eating in smaller portions and some nice walking does,or whatever excercise floats your boat.
Sure everyone can follow a prescribed plan for a time,but the key is making lifelong changes,and NOT,and I repeat NOT focusing on the pounds.
Two years ago,for health reasons,I totally changed my way of eating.I did it my way(Sorry Frank)
Over a year and a half I lost 78 pounds and several sizes.I felt great,it was nice to have a better variety of clothing to choose from,but you know what,and I have felt this way since I was little,and not fat.It is the inside that matters.Guess what,that is not the message we women are getting from anywhere,that is not the message we are giving our little girls and teens.I was a normal weight up until I had 3 sons in 3 years by age 21.Than my weight fluctuated up and down like a see saw.The sad thing is though,when I was a teen ,I thought I was fat,Thanks to subliminal messages in Teen magazines.Ads on Tv.My fat phobic parents.
When are we women going to realize and revolt,yes to eating healthy,no to a cookie cutter body type,cookie cutter weight chart.We need to stop comparing ourselves to other women.We are all born different,shaped different,look different.This is a good thing.
I must admit in my normal weight days to feeling quite smug sometimes about being at a normal weight ,while some were fat.Well,I am on the other side of the fence.I know the feeling of being normal weight,and being very fat.I still try and make healthy food choices,I know it is good for me,but having dieting and food take up most of our lives as women is to miss out on so much that life has to offer.
At 46,do I want to lose extra weight,You betcha,am I going to continue to try and make healthy food choices,YOu betcha.However,I am not going to starve myself anymore,spend tons of time figuring out how I can go down several sizes by a certain date,compare myself to so and so who looks like a model.
I am me,God made me unique,and he made you unique and different.We need to live women,We need to have fun,and stop trying to have the perfectly clean house,the perfect body,the perfect life,it ain't going to happen,and what a waste of our precious lives.We are worth more than tits and ass,we have heart and souls and personalities and love and caring in our favor.We need to stop trying to please everyone and their mother and learn to say NO.
We need to stop holding ourselves up to an impossible standard that no one can keep.
We need to love ourselves,imperfections,skin tags,moles,strectch marks,saggy boobs(that would be me) and all.We are more than our bodies.Much love to all the women out there.Be good to yourself....Peace

Things that piss me off

This morning I am going to write about things that piss me off.Hence the title.
First people,who are ignorant ,and have no idea what I am dealing with,with husband's dementia,that offer lots of unsolicited advice,remedies,holistic treatments,etc..Now I acknowledge,most people mean well.There are a lot of people out there who don't mean well.That is just plain fact.
There is a local millionaire,who husband has worked for painting for many years.He and his wife live in a Plantation house,have about 15 horses,vacation just about every weekend,and live a very comfortable life.
First of all said millionaire would not listen to me at all,when I tried to explain what Paul has.I told him to talk with son about business matters.Of course,being the ass that he is,and an arrogant Son of a Bitch,he refused.His equally dippy rich wife,for the 3rd or 4th time now has handed Paul the name of a holistic Dr. in Texas,and the name of some stupid ass herbal pills.
If I hear this one more time,I am going to blow a gasket.
I have an idea,all you idiots who think you know what I am dealing with better than me,take my husband for a month,deal with his violent mood swings,memory loss,childish tantrums and behavior.Any takers,of course not.I don't need advice from anyone who is not dealing with Frontotemporal dementia.Guess what people,you don't have a friggin clue.
I hear this kind of shit from a lot of the great people on the FTD support forum I belong to.They get it,they have a clue,you know why?Because they are living this disease and it's effects 24/7.
Them I will listen to.They are walking in my shoes with their spouses,their mom or dad,their son or daughter.Them and people like me,who are living with this horrid disease,we are the experts on this deal.
If you want to help someone who is dealing with FTD,or any other dementia.Put your money where your mouth is.We caregivers need rest and a break,not lectures,and suggetions.We need help .We are burned out,tired,grief stricken,worn out,and lonely.It makes it worse when outside people and even dumbell family members tell us what we should or shouldn't do,or that we are imagining this and making this illness up.
If you are truly informed about FTD,than you would know that this is not something any of us would choose for our loved ones,nor ourselves.I wouldn't wish this disease on my worst enemy.
After last week and dealing with mean,and arrogant MD's and people,I am spending this week in solitude in my own house,so I can decompress,without all the bullshit from the outside world.
Any caregiver out there,give yourself kudos,you deserve it.This is one hell of a ride,our lives change minute by minute,not day by day.It takes an amazing person to ride along and not go crazy ourselves.Be good to yourselves,I am trying to really work on this one for myself.
I am lonely a lot.I have a dear sweet friend who checks in on me and does little kind things for me often.I have another friend who is always willing to help.I have 2 other so called friends who give me more stress and agony than I need or want right now.So I am keeping them at a distance.
My husband was calm over the weekend,and than Bam,started last night and early this morning.The change is incredible.Even though I know it is the disease and not him.I was very very short tempered this am.Do I feel guilty,No I do not.YOu know why?I am human,I err,I make mistakes all the time.I am not Saint Theresa.I have flaws.People that drag you down and make you feel miserable,keep em the hell out of your life.Surround yourself with people who nurture your soul,and love you as is.Peace....

Thank you Aunt Carol,Much Love to you

I received a beautiful email this am from my Aunt Carol.I needed that email Carol.What I love about Carol,is she is real.The world needs more Carol's.She is a rare breed these days.The older I get the more I want to be with the Carol's of the world,the Christina's of the world.People who are real,transparent,not phony.

I am feeling very introspective today.I am emotionally tired,but feel enrgized in my soul,if that makes any sense.Husband Paul was back to talking gibberish,and nonsense yesterday and today.It was sad to watch.However I felt love,lots of love.Poor guy can't help what this disease is doing to his brain.
I went out early,even though I didn't feel like it.Ran my errands.I am glad I did.I go out early,so I can avoid lots of people,and their nosey questions,advice,judgements.It is more peaceful in the stores when there is hardly any one there.I am not a fan of crowded stores and mean people.

I am listening to Folk type music this am,a group called Iron and Wine.I have been putting thier cds in a lot these days.The music soothes me.
My allergies have been bothering me the past few days.Especially my eyes and my head.I have a little bit of a headache starting,and I am sure it is my sinuses.
I finished a Great book this past weekend.I recommend it highly to anyone who doesn't feel comfortable in the traditional church.I would be one of those people.I have always felt closer to the divine outside the "church"building.The book is called."Leaving Church" A memoir of Faith by Barbara Brown Taylor.It touched my soul.

My grandaughter will be arriving next month,or the beginning of April.I am so excited about that.First girl in 46 year on my side,28 years on daughter in laws side.Katrina Grace is so spoiled and she isn't even born yet,LOL.
My daughter in law Kristin is a Gem,and I am so thankful oldest son Tom married her.They make my heart glad.I miss my grandson terribly,I try not to think about it,but it is so hard not to.
I am going to start a new book today,not sure which one,it depends on my moods.I have been reading poetry a lot lately,very introspective poetry about love and loss.
It is in the 30's here in Southern Va,supposed to be around 50.Of course because I am the menopause queen,I have my desk fan blowing on me,ROFL.I was the only person at the food store this am in a tshirt.
I am waiting to hear from the Dr. from U.Penn,I emailed him again this am to make sure he got my reply from last week.I am hoping we can get an appt for diagnostic testing by April at least,but I will take what I can get.This guy comes highly recommended from several sources.
I wish my friends in cyberspace a beautiful day,and hugs....Peace

Moments of joy in the cesspool of Life

When your life is turned upside down by Dementia,you learn to cherish the small bits of joy,and the "old " spouse that you knew and fell in love with.It doesn't happen much anymore.Last night,I got to experience it for a brief time.I will take it,knowing that today the dementia took over.I got to cuddle in bed with hubby for the first time,in about 6 months or so.He rubbed my head before i fell asleep,small joy,but one I treasure.
The day before yesterday,I threw hubby out of the house,I couldn't take one more minute of his being mean .Than last night,I found myself calling his cell,worried about him.He was at a local hotel.Sounded like a lost little boy.I sobbed,could barely talk or breath.In his demented brain,my crying somehow got through.This doesn't happen much anymore at all.He said in a little boy voice?Do you want me to come home??Yes I sobbed,please.I spent all afternoon yesterday sleeping and feeling so down.
I also finally got husband to agree to go to the Dr. at Hershey who is affiliated with U.Penn.They are experts on FTD.Small victories,I will take what I can get.Today I stayed snuggled up to hubby almost the whole day.Even though he was out of it most of the day,his body was still warm,and from time to time he would grab my hand.Small miracles,small blessings.They are all I have to hold onto right now.I will take them.I will cherish them.
God Help me to be more patient,loving,merciful,kind,giving to my husband whose brain is being ravaged.Help me to not take it personal,help me to bite my tongue,when I want to lash back from exhaustion.God make me your vessel,to give Paul all the love I have to give until you take him.Peace....

Mourning What Once Was

It is almost 2 pm ,Sunday afternoon.Paul never contacted us,son Nick called his cell,he is at the Comfort Inn,30 minutes from here,and is looking for an apartment.While I am happy he is not in my face.I am so terribly sad .We had such a wonderful relationship for so many years.This man was the most wonderful companion,until FTD Frontotemporal dementia,for those not familiar,stole my husband from me and my children.

It is so weird the mixture of feelings going on inside me,relief not having him look at me with pure hatred,or blank.Relief not having him yell and control the tv for hours ,so I cannot watch a thing.
Such sadness though,Iknow he cannot help that he has this horrible disease.It turns people into horrible human beings.People you don't want to be around.I am grieving the loss of my best friend,my soulmate,my partner,my lover.The guy that was always there to cheer me on.Pick me up when I felt like shit.
No more,it is gone forever.I have accepted it,but it tears my soul into shreds.
I miss the passion from this man,the emotions,the love,the feelings.I miss him gripping my hand with his strong hands from years of painting.
I miss making love with him,snuggling with him,talking in bed for hours and rubbing our feet together. I miss it all.It is gone,gone for good.
I never thought in a million years I would be alone at 46.As our sons got older,I just could not wait to do all kinds of things with Paul,Travel,Visit kids and grandkids,walk around naked when no one is here.They are but a fantasy I will not have.
I know I have said this before in my blog,but it does indeed feel as if my heart is bleeding.It is the best way I know how to describe the feeling.
I am doing Paul's laundry,and got his meds,and clothing together,so son can bring him his stuff tonight.I know I still love this man,even though he is no more.There has been so much crap to deal with that while he is mean,and angry and violent,I don't feel it.
It is still there though.We shared everything together.We raised 4 sons together,laughed ,cried,everything.
I do still love him,but the new Paul is nothing like the man I met and fell in love with.That man has vanished.
I am thankful for my 2 dogs and 8 cats,and of course my pond turtle.They give so much love and demant nothing but affection in return.
Of course it is no replacement for the husband I lost.Peace

A Night of Peace

I am writing this,early Sunday morning ,6:10 EST.Husband never came home,I was praying he wouldn't.Youngest son called him on his cell,he was staying in a vacant apt he painted yesterday.
I used to love when this man came home from work,used to get so excited when his truck would pull up.Now I don't care if I ever see his face again.I have made up my mind,that I am going to get going on my life.If he doesn't want help or treatment,that is his deal.I am going to build myself a life,without him if need be.

I watched Larry the Cable Guy for a little while with 20 year old son,it felt good to laugh without hubby in the house,to kill the joy.I slept pretty well.I must admit I am anxious as to what today will bring,if and when husband comes home.I have gotten good at ignoring him when he turns into a monster,I am running out of patience though.I need to be strong,stay calm,and not take his shit anymore.
For the first time in my adult life,I am planning for a life alone.No spouse,no boyfriend,just me.I make the decisions,I plan for me,and not letting anyone shit on me is another big one.
I was proud of myself last night,I cleaned the turtle tank by myself,it is a huge job,but I did it.I was sore afterwards,but I accolmplished what I wanted to do.
Now I get to look at a sparkling clean tank for Homer,my painted pond turtle who is 6.
For anyone that doesn't know I am a huge animal lover.I have 2 dogs,Seamus and Gracie,8 and 9 in that order.I have 8 cats,Eliza Jane,Spanky,Destiny,Jasmine,Sweet Pea,Bella,Rocky and Apollo.Destiny was my husband's cat,she would lay with him all the time.She knows there is something wrong with him,and now avoids him like the plague.This past year husband started hurting the animals,he would deny it of course,the nature of Dementia.Most of the animals act weird when Paul is around.They sense he is off,animals are very intuitive.
I treasure the times when I take a nap,or get in bed for the night,and my 2 dogs come and lay at the side of my bed,and at least 3-4 cats cuddle with me.
With all the stress of late,my hot flashes have returned with a vengeance.I am already hot natured,since birth.Now I feel like I have my own personal furnace .So even though the temps may drop to 30,I still have my fan running,LOL.
I plan on relaxing today,as best as I can.Read,use the pc,sit on the porch and enjoy the country air.Of course,hubby could return and kill that plan.I plan to seize this day.Peace

To my Online Friends and Support Group

This blog tonight,Saturday evening,6:46 EST is for my online friends ,both from my blog and the FTD Support group online.If it weren't for you all,I would really feel alone.I mean,I already am lonely,but just knowing you gals are out there,keeps me going.I am so grateful our paths have crossed,although I wish none of us had to deal with FTD/Dementia.
I took a nice long nap today,I was so depressed,I needed it.I did some things around the house,and I am putting off cleaning the Turtle tank,not my favorite job.
Husband Paul has not come home,I have a feeling out of spite,he probably will stay at a hotel or something.I actually hope and pray he doesn't come home tonight.That is one night,I won't be on edge,or scared,or nervous and anxious.
My precious oldest son Tom,called today to check in on me,he is going to be a first time daddy end of March.He said,if Paul won't go to Hershey Pa,he will take leave from the Air Force and take him ,himself.What a guy!
Youngest son is feeling better from the stomach bug,and since Paul's rant this am,he has been hiding out in his room upstairs.
I also want to reach out to anyone out there,who is living with a spouse who has FTD,or any other type of Dementia,and who is lonely and needs an ear.I am here.I am online a lot.When I can be there and help others,it takes me out of my world temporarily,and it does my heart good.
I need friends,but I can be a friend as well.As any woman out there knows,the nights are the worst,the loneliest,the bleakest.I seem to be able to deal with things better during daylight.
I find a dread coming over me as the sun goes down.
For all you women out there who are lonely,suffering,sad,depressed.My heart is with you.Peace and Good night

8:17 AM EST-Satan is back with a vengeance

Now my heart is racing,burning,hurting,bleeding .Hubby has stayed in the upstairs bedroom most of the past 2 days.My mom left this am,and when he came downstairs,he was quiet but ok.Thank he pecked me on the cheek and said goodbye,he is painting an apt this am.5 minutes later,he called to ask where my car charger was at.It is mine,and I let him borrow it.I told him nicely,that I had it,which I had told him tons of times.He got mad on the phone,and than 2 minutes later was back at the house,mean and viscious,and telling me he is not going to any Doctors anymore,That the current neuro said nothing was wrong,and he was horrible to me.
I calmly told him,everyone else that knows you,knows there is something wrong with you.He was cruel to me,and I told him,if you won't go to the Doctors at U.Penn,than you must move out.
He will move out soon,I cannot take much more.I was already bummed when I woke up,now I feel like absolute SHIT! I am tired of being everyones battering ram.God Help Me

My heart is heavy

It is the early hours of Saturday am,EST.I just woke up a little while ago,and already the dread is in my heart.This morning my mom goes home.The one little bit of sunshine here for the week,the week that went all too fast.
I will be alone again with the husband with the diseased brain.The husband who treats me now like garbage,but who once treated me like a princess.

I was up till late last night,youngest son had a horrible stomach flu,and was puking his guts out.It is amazing,even though he is 20,he will always be my baby,and I felt the need to take care of him,get him liquids,put a cool cloth on his forehead,check on him.
Ihave always been a nurturer,always had compassion for the hurting,downtrodden,sick,abused.However,even though I know husband has dementia,I have lost some of my compassion.It is hard to feel love and compassion when your husband has turned into a ghost,a shell of the former husband,and maniac,who changes moods so fast.
I can't get over what that Neuro wrote last week,when I requested a referral letter for hubby .
I am outraged that he insulted me and put me down.It dredges up memories of when I had cancer,and was being constantly misdiagnosed and called horrid names,and treated shabbily.
I will not tolerate it,but it hurts so bad.
Over a year and a half ago,I lost 78 pounds.On my own,I changed my way of eating,was walking several times a week.I felt great and I was proud of myself.Than,when I tore my knee,and couldn't walk,move,I started gaining weight,even though I wasn't eating junk or anything.Now in the present,I haven't been eating well at all.I am trying to survive folks.I am not off the deep end with my eating,certainly not like before,but after the fat comments by the Doctor,I feel insignifant and small again.I feel like I am a body,not a person or a soul.It pains me greatly.
When I was thinner,and younger,I was just a piece,a body with breasts,and genitals.Nothing more.I have had to stifle so much.I am tired of doing it,but no no other way.When I let go,and let people in,I get shit on.So there are not a lot of people I show my heart to.
Peace....

With Gratitude and Thanks

I would like to take the time to sincerely thank Connie,giant hugs to you girl.I needed that email from you this am,when I checked.I totally understand about having your hands full.I wish and hope for peace for you and your family as well.
This is a tough road girlfriend.I wanted to let you know,I appreciate you taking the time out of your crazy,chaotic life to cheer me up,and encourage me.I hope I can return the favor,when you need me.
Many Blessings Girlfriend,sending you hugs and love across the miles.....Peace....deb

This year I hate Valentines day!

I haven't written in a day or so.Too depressed.Long story short,today,finally got good news about a Doctor who specializes in Frontotemporal dementia in Hershey PA,who is willing to take Paul without a referral.I emailed him personally and begged him. The most recent neuro,wrote a scathing,mean spirited,cruel letter,that was less a referral than a personal attack on me,my weight,and my depression,which has nothing to do with my husband and his aberrent behavior.

I went through this when I had cancer.It was very painful and hurtful to have Doctors insult me because I am heavy,not listen to my real fears,and complaints,because i am on antidepressants.There is no excuse for that.i know i am not alone,and that it happens to others,It is inexcusable.

I am happy my mom is here,sad she is leaving,day after tomorrow,and she got to see first hand what a psychopath husband has turned into.Now he is even going off at me in front of her,and taking her aside every day to tell her how I have taken all his money.
On a good note,this morning is when the Doctor emailed me to tell me the good news.Even though I have to travel from southern va to Pennsylvania,it is worth it to find out what the hell is wrong with Pauls brain.
It is getting to the point where I am going to divorce him.He is cruel,mean,doesn't shower,brush his teeth,change his clothing.And he directs all his evil at me.Even though I still try and be nice.Today I didn't care.No matter how nice and patient I am,he is crazy,cruel,aggressive,and I hate him.
I bought him a box of candy for valentines day,just a little something,this used to be a big day for us,he was romantic several years ago.He gave the candy to his friend.Of course I was not expecting anything from him.That is ok,I don't want anything but peace.Him out of my face,out of my life.I am tired of selfish,rotten ,arrogent bastard men!
My youngest son age 20 and his best bud,took my mom and Davrons grandma out for Valentines day.I was invited,but am too depressed to go.I am at the end of my rope.I am so tired of trudging on,day to day,only to have people judge me by my weight,or my depression.I just want people to see my heart,but they don't look that far.Peace.....

Validation/Family and friends

I think one of the most frustrating and bothersome things,besides the fact that my husband is no longer who I knew,is the fact that except for my older son,youngest son,and my 5th son Robert.No one thinks there is anything wrong with Paul.
I don't want anything to be wrong with my husband.I wish it weren't so,but it is,and dammit,it has been a hell of a ride the past 4-5 years.
It has not been easy one bit,being married and living with Paul in that time span.

Even though hubby has not received an "official"diagnosis,they are still testing.It is painfully clear and obvious,me ,his spouse,who know's him better than anyone on this planet,that he is not the "old" Paulie.
My whole life I have had to validate who I am,me as a person,what I am doing.I am sick of it.
We just finished dinner and my mom,said I really can't see any difference in him.I wanted to bang my head through the wall.Hello,he has slept on the couch the past 2 years,he sleeps all the time,I mean all the time.He is not talking nearly as much as he was,and he wears the same clothing and doesn't shower sometimes for a week.
I feel very alone,very very alone.I feel isolated,angry,very angry.
If it wasn't for this darn blog,I would stuff every feeling I have.No where to go.
My entire life I have been told not to feel,to think,to act.I am sick of people trying to run my life.
I am living this nightmare,no one else,except youngest son,who isn't here all that much.
My entire life I have always felt alone.I would cry,but I think I have run out of tears.I am so sad,I am so messed up emotionally,I haven't even been able to go to the FTD Support forum.I feel so bad for all the hurting people there,good people,who I wish I could comfort.I don't know what to say,I am having enough trouble dealing with my stuff.And still my heart bleeds,slowly,dripping,slowly on and on it goes...Peace.

Walking Alone on an Uncharted Course

It is Sunday am almost 10.I have been up since 4,mom is here,which I am happy about ,but she has to rearrange my house and bug me about it.I have already started dinner in the crockpot,so I don't have to deal with it later.
A friend of ours,a Pastors wife tried calling tons of times this am.I finally picked up the phone,and she was in a panic,all because she wanted to drive Paul to church.I said nicely,Betty,Thanks for offering but it is not a good morning.She wouldn't stop,asked a bunch of questions,I nicely said again,Betty Thanks for offering but not today.She said ok abruptly and hung up very upset,What is wrong with people?How many God Damn times do I need to explain what is going on?I even printed tons of handouts so the people Paul goes to church with( I don't go) could read about Picks disease,and I wouldn't have to answer so many questions .
My head feels heavy with pressure this morning,I need to scream but I can't.Of course I have to silence all my feelings again.
Here is a note to so called Christians,Preach with your life,not your lips.Than maybe so many people wouldn't hate Christians.....I am mad as hell this am....Deb

Thanks to friends on FTD Support Forum

I want to thank my friends on the FTD support forum,for being some of the greatest people I have never personally met,LOL,but feel like we are family.They understand like no other what I am going through.It is because of these great people,that I have a place to go where i don't have to explain a thousand times what is wrong with hubby.You get real tired explaining over and over to people who have no clue about FTD.So thank you from the bottom of this tired old heart,and lots of love and hugs to you all.Peace....

Why I hate Doctors Part 2

Well today started out ok,compared to my other days.I continued to fill out paperwork,make phone calles,get affairs in order,do laundry,household stuff,take care of hubby,pets,etc.
Guess what?I can't take hubby to the hospital in Boston,or anywhere else for that matter,because they need a note from Primary physician ,who has known us for 14 years.He said I do not want to get involved,and since Duke,last year found nothing,and you are currently seeing a neuro who is still testing.No.If my head could have exploded it would have.Thankfully my mom called shortly after and gave me words of wisdom and it calmed me down,the diet coke spiked with red wine surely helped as well.
Anyone who lives with someone with dementia knows that they repeat themselves over and over and over.Sometimes I just want to scream,"Shut UP".Of course I don't,but I feel like it a lot.
I am dealing with ignorant people who still don't believe something is wrong with hubby.Had to deal with one of his former contractors today and he was quite rude to me.
I am happy I got some things done around here today,the mobility in my knee is better,and I managed to dejunk some stuff,straighten up the house a bit,and take care of all the other stuff.
My mom comes tomorrow,and I am very happy about that.At least I know I will have fun for a week.
I am going to close for now,I don't feel like talking anymore,and I want to hibernate...Peace

New Glasses and New Neuro team

I decided last night,I am tired of the way I am being treated by current neuro.So Thanks Tony,for the referral about Brigham and Womens Hospital in Boston.Got hubby registered,tomorrow i call and make an appt,Than need to get airline tickets,and hotel for a week,and someone to watch my animals.Of course I knew the Social Service visit today was going to be a joke,they didn't even know what frontotemporal dementia/picks disease was.I had to give them handouts.They kept asking hubby questions,even though he can barely talk.I swear my blood pressure must be high.

Of course as is the routine now,the minute I walked in my family room to use my pc in the morning,he started in on me.He told me this afternoon to take off my new glasses so he could punch me.Thankfully 20 year old son was here,and went up to dad and said,YOu will never ever say that to mom again,you hear me.To which hubby put his head under the blanket and fell asleep.
I can't wait until the day when I live alone,with just my animals.The past 4-5 years have been like living daily in an insane asylum.From which there is no escape.
On a positive note,I finally got my new glasses.Only had to wait over a year.Now maybe some of my headaches will stop.Plus they are really cool looking,they are from Levi Strauss.
I need people to email me who are reading my blogs,I am very lonely and isolated.I thrive on the connection with others ,Please people,I know many of you are dealing with your own shit,but drop me a line ,just to say hey.Peace....

Thursday am 8:25

I pretty much passed out last night from sheer exhaustion,at least the past few days I have slept solid through the night.Hubby just woke up and started on me the minute he opened his eyes.My patience is running thin,I told him if he continued he could spend the day upstairs in the guest room.I have been patience but this is wearing me out.

We have a Social Worker and Nurse coming to see if I can get some help,and a much needed break.
I don't have much trust in Government works,had past experience.Hopefully they can prove my cynicism wrong.

Last night there was a small window in time ,where hubby was coherent,actually had a nice conversation with him.It is bittersweet,because I know it will not last,and may never happen again.

I am seriously considering changing Neurologists.I may take hubby up to Boston,or down to the Mayo clinic in Jacksonville. The current neuro has an attitude and treats me like a child.I will not tolerate that.

Met another spouse whose wife has Early Onset Alz disease.I am grateful for anyone I meet who is dealing with this type of thing.They are the only ones who understand.
I need to really start eating better.i was eating so healthy until this stuff got worse.At least my skin has cleared up,Thank God for small miracles.
The weather here in Southern Va has been gorgeous.Sunny,breezy and about 70.I love this type of weather.
My mom comes down in a few more days.I can't wait! We have so much fun together,we play cards,games,go out to eat,go shopping.We just love each others company.

I have to finish the SS paperwork today and my tax return and pay some more bills.My desk looks like mountains of papers.
I am feeling depressed today,I have a knot in my stomach,my head hurts,my body hurts.I am so grateful for my cats,dogs and turtle,they keep me going.Peace

Bitter and Jaded and Burned out

It is Wednesday early am.I am bitter and jaded and burned out.People are still trying to give me the positive thinking,scripture shoving down your throat crap.That is because they are not living my hell.So it is easy for them to give me platitudes.
I am sick of it I tell you,sick sick sick of it.
I am so burned out,and tired,and angry and lost,I have so much to do today,but guess what.The paperwork and phone calls are not going to be done today.I have spent almost every waking hour for the past few weeks on the phone,to bill collectors,Doctors,Nurses,Social services,trying to straighten out our financial mess,that husband caused.
And in the midst of all this,the man I once knew is mean,vicious,and cruel.That doesn't even include the fact that it is like taking care of a 4 year old all over again.Last night even though I wrapped the couch in towels and extra sheets,he wet the leather couch,it went through everything.
Starting 3 years ago,at least once a month,husband would wet the bed.This is also part of this disease,incontinence.I have an appt next week to go long at my first choice of Nursing home,for when I can no longer care for him.
I can't do anymore today,my legs are killing me,my head hurts,my health problems are hitting me with a vengeance.The only thing that I am looking forward to is my mom coming Saturday.
I had a very unpleasant 2 phone conversations with the Neuros nurse yesterday.I am tired of being very nice and pleasant,only to be shit on.Still I am nice and pleasant,but you know what people,how much am I supposed to take before I snap??The Neuros nurse was rude, and nasty.I asked her,what am I supposed to do,husband is getting more aggressive and violent.I told you Mrs. Caruso,there is nothing the Dr. can do,you have to call the police.So I guess after husband kills me,than the police can put him away.Even though I am exhausted,I still keep plugging away,I keep on going.I need a break,but of course no one wants to give me one.They just want to keep telling me that God will take care of me.Pardon me while I vomit.How about someone act like Jesus and give me a break for an hour or two,or sit with husband .Of course not, no one wants to do that.It is so much easier to quote Scripture at me,or Positive quotes.
Please don't say those to me anymore,they are meaningless in my world.Peace...

Isolation and Dementia

It is Tueday am almost 9.I am now relegated to staying in my bedroom at night,to escape the wrath of Paul.I tried to be nice and kind to him last night,but the minute I entered his domain aka my tv room,the craziness started all over again.
I had a super busy day yesterday and mind you my knee is not totally healed and I have arthritis ,and fibromyalgia.I did a bunch of errands for my elderly friend and neighbor across the road.I was happy to do it,but it took up my whole afternoon.
My son Nick told me that when he took his dad to the paint store with him yesterday,everyone was staring in shock,my husband was looking and acting like a demented person.I am very proud of Nick,he had to literally grow up over night and handle huge responsibility,but he is doing ok,and will learn more as he goes along.

Last night after Paul ranted and raved at me again,my son told me he would set his dad straight today and that he would protect me.
I have to admit,I was really scared in my own house last night.Paul is becoming so psycho,I don't know this person.He is becoming very scary,evil in his eyes.
I have been sleeping with my cell next to me in bed,and I am thinking about getting a golf club,just in case I am here alone with him.So sad after 23 years together I am reduced to this.

It is amazing ,since Paul started really showing his dementia symptoms big time,everyone stays away,you find out who your true friends are and are not.All the people I thought would be there for me are not,and there are 2 people I didn't expect much from and they are helping me all the time.Peace

Why I hate Modern Medicine

It is Monday 6:02 pm.Satan is home,and sitting across the room.My time is precious now.Paul has been in a very very foul mood since Saturday,and guess who he is taking it out on the most,ME.
Second target is now youngest son who now know dad is not functioning normally.

I titled my blog tonight that way because I have had a lot ,and I mean a lot of personal experience with Rotten Doctors,Nurses,Emergency rooms,Psychs(I won't even go there)not tonight anyway.

Go back with me 5-6 years ago.I was very ill.Bedridden pretty much all the time.Went to every Doctor and Specialist around.Basically,I was diagnosed from everything to Lymes Disease,Chronic Fatigue,to the one that really pisses me off BIG TIME,YOu are just Fat ,you need to lose weight,or you are on antidepressants,so we aren't going to take you seriously.Hellooooooo,I have depression,that doesn't mean I am 5,and that you have to talk down to me.
Finally after 3 years of sickness,pain,discouragement.I missed one of my sons College Grads,Numerous family functions,missed out on life,a Good Doctor found that I had uterine and the beginnings of cervical cancer.I had a big growth on the opening of my cervix.
They weren't sure whether I needed to go to a Gynecological oncologist.After My Gynecologist conferred with the oncologist and sent my samples,she felt that if I got a radical hysterectomy with ovary removal,I would be in good shape.So 2 biopsies and 2 surgeries later,I am cancer free.I never wanted to see another Doctor or Medical establishment as long as I lived.
Well of course,now I am back to see the Neuro,with hubby ,like All the time.
Anyway,back to this am,I called the Neuros office to ask for a letter from him to give to several ad agencies husband wasted our money on.They said they would release him from the contract if the Neuro said he was incompetant.Neuro hasn't finished testing yet,even though husband is at the level of a 3 year old,so no letter.Well ain't that friggin great,must be nice to have tons of money in the bank.I have a pile of bills here that could choke a killer whale.I have no savings,the only money I have now is for some of our current bills.I will digress and say there are out there,somewhere some good Doctors,but boy you Medical know it alls,You have a LOT TO LEARN!I spent all day yesterday and today on the phone,filling out papers,making health related and financial calls,etc,,,etc...Just one of husbands new Rx.s was 250 dollars yesterday,he takes 4!How the frig am I supposed to pay for this,how is any normal person able to live these days.I am MAD

Horrible weekend,and Necessary Decisions

I will try and get my feelings out on this past weekend.I am beyond exhausted and trying to keep one step ahead of the raging lunatic that has become my husband.
This weekend,I had to make a judgement call.In the best interest ouf our family finances,the public's safety,and the good of all.
Son and I informed Paul,that Son is now in charge of the paint business.We cannot afford any more huge mistakes that hubby has been making,both in judgement,and in money matters.This was extra hard because Paul has always been a control freak,and for our 23 years together has doled out money to me on an as needed basis ,as if I was 5.
Now that I know I am dealing with a totally irrational mind,a damaged brain.I knew there would be fallout,I was expecting it,and boy did I get it.Saturday am,he was a psycho,finally,and thankfully son told dad,You are not able to paint like you used to,you cannot paint a straight line,etc...This was important,because for a long time,son was in denial,and I was the baddie.I am sick of being the family scapegoat.
So this was very validating for me.I was also happy because it means son is growing up.
Starting today son is in charge of the jobs,contractors,money,etc...
Of course husband aka Satan gave us hell all weekend long when he wasn't sleeping or eating large quantities of sweets.
I took both his checkbooks,his credit cards,since they were paid off and he has already gotten them way up again from charging his paint on his cards.
This was painful to do for many reasons.One it made it very very real,he is incompetent.Secondly,for the first time in my life,I am totally in charge of my life.This is not a bad thing,I have been wanting it for years.It is scary though,since I am a novice at it.I do have a good busienss sense,and a good brain.I know I can do it,but it is scary.
Than last night,husbands best friend came over to watch the Super Bowl.This gave me a much needed break,and I pretty much laid around in my room,in between animal chores,and dishes,etc..
Than 5 minutes before friend left,Satan was back with a vengeance.In front of his friend,who stared in absolute shock,as Paul started in on me,he was a maniac.I had to usher his friend out the door quickly(he is one of those people who don't take a hint)Tell husband it was not open for discussion and I limped into the bedroom on my bad legs,and boy they hurt now.
I read for a little bit,and thankfully was able to go into a nice oblivious sleep.
When son takes Dad to work today,I know he is in for a very hard time.Thankfully son knows how to deal with his father.I have mountains of SS paperwork,and Social Services paperwork to do today.I have a pile of bills to pay and only a little bit of money to pay them.I have a ton of phone calls to make today,things to do.I don't know how I am going to get through this,but I am sure I will.
I just have to remember to not think to far ahead.The present is bad enough.
I am lonely,and need friends,people,a sane voice....Peace

Dedicated to Donovan Patrick Born11/23/2005

This is going to be a very painful blog to write.This blog is about my precious grandson Donovan Patrick,whose parents have kept away from me and my husband.This was before husband was showing major signs of this disease.
Let me preface this by saying,This 25 year old son of mine and his wife,got us so pumped up about the pregnancy.I was even present when my daughter in law delivered my grandson.I should have known things were going to go horribly wrong,when my son started telling me,a mom who raised 4 sons and 2 step kids,how to hold his infant son.Than,2 weeks after my absolute joy over this new life,son called on the phone and said coldly,If you want to see your grandon,you need to bring a change of clothing,that we launder,because we pulled a cat hair from his nose.I was stunned,never in a million years had I imagined this.
I was hurt,angry,but I kept my cool,I nicely tried to find out what brought this change,he wouldn't answer me.So like a groveling idiot,I was only allowed over one morning a week for 2 hours,to visit with my grandson.If I brought him toys,they wouldn't let him play with them till they washed them.I wasn't allowed to take him out in the back yard,even though he cried to me,"MImi"Outside,They wouldn't let me.Son and his wife moved to Delaware last year.I get no recent pics,I haven't seen him since last June.I call on the phone,and he can never talk.I will never forgive you Brian for doing this to me and daddy.Donovan my precious baby,you are innocent,and I can only hope and pray,someday you will come to find your "mimi"who has loved you even before you were born.
Even though I have a precious Grandaughter arriving end of March sometime,Donovan Patrick you will always hold a special place in my heart.I love you baby,I miss you terribly,I think of you all the time,and hope i can see you before I die.God Bless you precious grandson.God Bless you....

Loneliness and Heartbreak

It is night time,the time when I feel the saddest,the world quiets down,and I get to hear my heart racing out of my chest,I hear the sound of silence.I see the man I married curled up on the couch like a little kid,no talking,my stomach is ripping apart.My heart breaks for my son Nick who is losing his best pal,and buddy.His dad.Nick's best friend in the whole world,Paul,was killed in a car crash a few months ago,a year before that another close buddy died in a car crash.He said to me recently,Mom,why does everyone I love die???!!Talk about ripping a mommas heart in two.It hit me today,I mean really hit me,that I am alone,I am going to be without my husband in the near future,I really am now evern though he is still technically here,.Mentally he is gone.Peace...

The Asylum

It is Saturday Feb 2,1:24 EST.This morning was bad here,really bad.Paul went out after I took his car keys,he had spares hidden.When he got back,he was talking crazy,and getting increasingly agitated and psycho.Nick,my 20 year old,the baby of the 4 boys,was sobbing by the time Paul had run out of venom.Try talking to someone with Pick's disease,or FTD,it is like talking in crazy circles.When you are done talking,your brain is fried,and you have no idea which way is up.Now that Paul has worn himself out,he is asleep on his "bed" .He said he was going to run away and dissapear without a trace,than he said he was going to run into a tree,or kill himself.
Of course there was the ever popular "YOu just want my Social Security .""You want me to have this disease so you can put me away."Yeah right,I wouldn't wish this disease on my worst enemies.It is Hell,I tell you,Pure unadulterated hell!
In a little bit,I am going to finally shower,and go into town and get out for a bit.The fresh air,it is almost 60 here today,and sunny.I am going to get out among the living,even if it is a short time.I will take any moment of peace I can grab.
I started dejunking my room this am,it is looooong overdue,even my cobwebs have cobwebs.
I am going to get someone around here soon,to totally rearrange my bedroom furniture,new look,fresh start,so at least there can be some order in my chaos.
I had to take an antianxiety pill after this mornings crap,so I am feeling more mellow.
Hubby threatened me this morning,I calmly told him,you get ugly,I call the police,they take you away.Period.Being a survivor of all kinds of abuse,I have a survival mode that kicks in automatically.
I will not allow anyone,man ,woman or child to hurt me again.
My brain is tired ,and I need to get moving,or I will not move.Peace

"Penis Pizza" and hypersexuality in Dementia

Ok,so anyone who is dealing with someone who has Frontotemporal dementia/Picks disease,knows what I am talking about in this post.
My husband thinks everything looks like a penis or vagina these days.I try and tune him out as best I can.When he brought a piece of wood from the backyard woodpile in the house a few weeks back,he told me it looked like a Vagina,well,maybe a very very old and decrepit one,LOL.
I hope to God,he doesn't start masterbating in public,yes,this is one of the symptoms of this horrid disease.
I read on my support forum,of wives taking thier husbands out to eat.Well,that won't be me.I have enough stress,without having to worry at Shoneys,that he will think the sausage links look like penises,or the bacon resembles a vagina.Nope folks,I have enough to deal with.
Paul is fast becoming mute,Thank God Almighty,I am free at last!Last week I had to listen to hours of bird calls,and him repeating the same sentence over and over again.Than there are the tics,and bizarre vocals.Oh yes and we had "Silent Football"Last week,which means he had the tv muted,so I could have silence,LOL except he yelled at the tv the whole time.

Someday when this is all behind me,and I have a new,"Peaceful"(I will believe it when I see it)life,I would love to meet my fellow spouses who have dealt with this disease and have a super fun get together somewhere.We deserve it !Peace...

Coming tommorrow to a living room near you

Tomorrows post will be "The Adventures of the Pizza Penis"Dedicated to my new friend Connie,you know who you are,I hope,LOLOLOL hugs girl...

Not eating,and still fat,LOL

Ok,I am feeling silly because I had a big glass of spiked Diet Coke.It struck me funny,that for all the posts I am posting about not eating,I am still Fat,and that my friends,just makes me laugh right now,I will end this nightly blabber with a quote,from the old time comedian Alan Sherman."
If you see that fat person standing on the corner,do not scoff at him,take off your hat,put it over your heart,and say,"Hail to Thee Fat Person>"ROFLMAO Peace and Blessings ,Good night!

Satan is in the house

So husband comes home today after "working".He tells me he is going to Farmville tomorrow am,so I take a deep breath and say,Hon,you are not driving anymore.If looks could kill,I would have been dead on the spot.His eyes ,once warm and loving,cold,calculating and scary.
Just made him dinner,even though my entire body is in such pain.Both my legs are acting up today,the stress doesn't help it.
I am having some wine mixed with diet coke.I have to be sneaky,because with Pick's disease,FTD,they crave alcohol.Hubby was never a big drinker,and than over 2 years ago,started drinking it like water.So I have to hide the wine bottle in my closet.

My computer is in the Family Room,right next to his "bed"aka couch.I need my youngest son to move it into my room,so I can have peace and quiet,but he never seems to be around.
I know I need to eat dinner,but I have no appetite,and as I said before in an earlier blog,Food and me have always had a love affair.I have to force myself to eat small healthy things,but everytime I put it in my mouth I gag.
My head is so full,it feels like a bomb waiting to go off.My heart is still racing.Soon husband will do his nightly 4 hours of Law and Order,Without a Trace and other morbid shows.We only have the one tv.What I want to watch doesn't count anymore.Keeping husband quiet and mellow does.
I usually read a lot,but can't even concentrate on a few lines.I am not advocating suicide by my next statement,by any means,but I sure know why people would want to end the intense emotional pain.Peace.....

Jeckyll and Hyde are back !!!!

Just when I start to relax just a smidge,BAM,Satan is in my living room.Totally absurd things coming out of his mouth,his wrath or anger targeted at me.I am starting to question my sanity.I was on the phone,the entire morning(aaarrgggh) with Social Security Disability,Social Services,Home health,etc.etc.etc.
I managed to crawl into my bed after lunch,even though I forgot to eat..again.I passed out after a few anxiety attacks in bed,and slept for almost 2 hours.Woke up with panic attacks,and my heart is still racing.
I decided tonight I take his keys.His truck keys,his car keys.He is no longer going to be able to drive whether he thinks he can or not.He is a danger now to people on the road and to himself.I know I am in for a lot of crap though this evening.Trying to drill it into youngest sons head,he needs to grow up like NOW,he has to take over dads jobs,or we will have zero money,zilch,nada.
As it is we barely have anything.Some days he seems like he is with me and will help,others he drifts away into his own haze of sadness and depression.
Speaking of depression,I have had clinical depression since age 13.I also have PSTD,and all the shit that goes with that,hubbies illness has triggered everything .I don't know how I am even functioning,or am I even functioning.I guess I am,the cats and dogs and turtle are fed.I am in my pjs again today,don't feel like getting dressed.For what,i am trapped .....Peace

Friday 7:45 am EST

Have been up since 5 am,preparing legal documents,Living will,etc.....Slept well last night again,must be the Benadryl.I still feel so tired and exhausted though.Since yesterday am,husband has been awake a total of 7 hours,the rest of the time sleeping on the couch.He is still trying to go to work and Paint.Youngest son told me yesterday that hubby can't even paint a straight line anymore.This is a house painter with a great 35 year reputation.So son is basically the foreman on the job,and Paul just goes ,I think it is the last normalcy he can hold onto,but it is slipping very fast.
He has not showered in days,nor brushed his teeth.In the grand scheme of things,these trivial matters can go by the wayside.He only wants soda and sweets,so I try and get him to drink Gator ade,and juice in between the soda.This Pick's disease causes the sufferer to want sweets and junk all the time.It is odd to have your husband in the house,but so silent.He is fast becoming mute.I watch him twitch in his sleep,count numbers,talk gibberish,my heart breaks all over again.H seems like an infant in so many ways.Next week I need to go to Social Security and do all that junk.I hate Goverment workers.
I prepped youngest son yesterday ,and for the past week,If you want to work,you need to tak over Dads business right away.He is bearing a very heavy load for a 20 year old.

The weather here today is bleak,just like my life.Rainy,Sleet,Gloomy.I have already had 3 cups of coffee,still feel tired.Now I am onto my Diet Coke(Gods Gift)I love that stuff.

I am hoping for good weather for Feb 9th.My beloved Mom is supposed to drive down from NJ.Of course if the weather is bad,no go.I miss her terribly,and I need my mommy.Somedays I feel like sucking my thumb and curling up with my favorite blanket.I feel so insignificant.

I am walking around feeling like I have the body of an 80 year old woman.My arthritis is so bad,my psoriasis is flaring up the worst it has been,my exzema is out of control,I am breaking out from too much stress.Peace.....

This is my Hope and Prayer

Ok it is 9:11 ,husband is zonked out on his new bed,our family room couch.All the meds have kicked in,Thank God!
I received a beautiful email tonight from a wonderful lady in another state.Everyday I type this gut wrenching stuff,I say a silent prayer,that somehow,somewhere ,some way my blog would help people.People who are suffering just as I am,people who are lonely,fed up ,tired,worn out.Thank you God for answering my prayer.Peace Connie,I needed your email today,I am grateful,Thank you...Good night all

Quote of the Day in honor of Soul Sister and J

"A Chief Event of Life is the day in which we have encountered a mind that Startled Us."Ralph Waldo Emerson

I dedicate this quote to my special pals,Soul Sister and J,I love you both,even though we have never met.Peace

Today.....

Here is the latest from the Dementia front.Last night,I finally had at least 7 hours sleep.That is good.I wasn't functioning well on 2 hours a night.
Husbands neuro upped his meds,and added to mood/antipsychotics.Paul has been becoming violent and aggressive.Thankfully,these meds have mellowed his ass right out.Relief for me,even if for a time.

Am in the process of handling all the household stuff,family is helping,lots to do,lots on my mind,brain overload at least several times daily.
Husband has another test on the 18th,another brain test,and another neuro appt a few days after that.
Youngest son age 20 has been looking for a house to rent.He will be close by,but not in the house watching his father die.I totally understand.
It is extremely hard to watch a once vital and strong,loving man,be reduced to the shell he is now.
Painful does not describe it or even come close.
I have been in the same pajamas for 2 days.I need to take a shower,but that takes too much energy these days.Plus my knee has been killing me the past few days,and my right ankle/foot which has been an ongoing problem,and the list goes on.Peace...

Another day ,another migraine.....

Thankfully I slept last night.Today,another day walking in the fog.Please forgive me if this offends anyone,but last night I wished my husband was dead.Living with him the past 4-5 years has been hell .No picnic,no fun,no life,no love,emotional abuse.Still have the horrible headache,even my strong meds won't take it away.Guess it is a cumilitive stress thing.

I decided today that the end of February,I am getting the hell out of Dodge,aka Keysville Virginia,and going to my oldest sons house in Sumter SC.I need a break from this insanity,this madhouse,this prison.This house which was once my refuge,is now my hell.So I will probably go for about 5 days,and leave youngest son in charge of Dad and the animals.My brain needs a breather.

Reality

I am back to the point where my words are stuck deep within my soul and mind and body.They tear at me,ripping me to shreds,over and over.I want to write my thoughts,but so much pain.Took husband to Neurologist again today,he put him on stronger meds,because husband is becoming violent towards me.In our entire 23 years this has never happened.A damaged brain does crazy things.It was a very stressful day for me.The ride there and back,over 1 and a half hours travel time was pure hell.Paulie does not do well on long car rides anymore.Thank in the Docs office,he told the Doc again,that I was trying to put him in a home and steal his money.I know,it is Dementia talking but it still hurts God Damn it!I broke down and sobbed,I couldn't contain myself any more.
People don't know what to say to me anymore.Pain is uncomfortable,grief is unbearable,depression makes people stay away.
I hid the phones today.Sick of everyone telling me to chin up and think positive.you know what ,you people couldn't last 10 minutes in my world.I should be used to this,but I am not.I am living with a crazy man.He is Dr.Jeckyll and Hyde.Mood changes so rapid,I think I am living with ten people.All escapees from an asylum.
I have given up hope I will ever have peace in this lifetime.That is all i ever wanted.Not money,not fame,material goods,fancy cars,just peace.God that is all I ever asked,and you have never listened to me ever.....

Grief has stolen my voice today

Cannot write today,drowning in grief .I feel like I can't breath.I can't take anymore pain.

Loss of Passion

While these thoughts keep pouring out,I need to get them out.As a survivor of incest and other sexual abuse,Paul is the only man I ever trusted with my body,mind and soul.It took me so long to really enjoy our physical expression of love.I didn't think I would miss it,but I do.I know it is not funny,but it has been so long that even my lubricants have dried up .
I am a passionate soul by nature,so was Paul before FTD.I loved his passion,not just in the bedroom,but just the way he looked at me,and talked to me,and held me ,and kissed me.It is not longer,and I mourn greatly.

Migraines and More pain....

It is 9 am ,didn't sleep again.Have been having lots of different types of headaches these days.Sinus,stress,cluster headaches and the big M.Migraine headaches are from hell.Plus I need new glasses and won't have the money for them until next week,and than it takes another week for Walmart to get them in.Sheesh.

Hubby went to mens prayer this am at his church.He is driving less and less,for the good of all.I am worried though,he was really out of it when he left.
As much as I hate "Church"I am going to take hubby tomorrow because it will make him happy.I want to make him happy.So I will swallow my pride,push down the bile I feel when I enter that church,and do it for Paul.
I am thankful for the few hours this am of solitude,and quiet.When Paul is home,which is a lot these days,it is a mental time bomb .His moods cycle so quickly,I have to be one step ahead.When he accuses me of poisoning his juice,sometime I change the subject,other times I joke,Hey if I wanted to kill you,I would smother you in your sleep.I know,morbid humor,but anyone dealing with this disease will totally understand.
I am finally able to say,my knee that had the surgery is doing much better,less pain,more mobility,that is so good.
I actually spent most of the day out yesterday,taking care of business,I treated myself to a haircut and neck message,opened my own checking account,and had an eye dr. appt.
So even though I looked like hell,it felt so good to be in my car,and not be going to a Doctor appt.
Last night,it pained me to see my 2 dogs and even my cats look so depressed about Daisy Mae being gone.It breaks my heart.
I was able to read for an hour last night ,to try and help me sleep.I usually in good times,love to read before bed.For a while now,I can't concentrate on anything.I got some laundry done this am,and decluttered some things.Dust I can tolerate much better than clutter,my own personal OCD.
Called my youngest son last night,just to make sure he was ok,he sounded sober,and clear.Small miracles.He and I are trying the best we can.
Have another busy ,crazy week.Neurologist appt Monday am,Tuesday I am going house hunting ,never did this before.Hubby always took care of lots of stuff,but I am finding I am not too bad doing these things.Wednesday,back to the hospital for Paul's sleep deprived EEG.This means he has to stay up all night after midnight.I have lots of bills to pay this week.Paul has totally tanked our finances.Oldest son checks in on me once a week ,he is so special.Big hearted,caring,compassionate.I am so proud of him.Especially since the first part of his life was very very hard.He has overcome so much .Peace

Why does it have to be my husband God??!!!

Another night,my precious youngest son Nick,just escaped the lunacy which has become my world,our world.Except he can leave the house and get lost in booze and pot :( He was doing so well,than this big whammy about his dad,his pal,his friend,back down into the spiral.I can't leave the craziness which has become my world over the past 4 years or so.I feel as if I am suffocating.Last night after trying again to fall asleep and not have it happen.I went into the Family room,which has become hubbies new bedroom over the past few years,sat in the dark,rubbed his hair and wept.Held his hand,even though there was no sqeeze back.That's ok,darling Paul.You were there for me,for so many years.YOu saw through all my garbage,down to my core,you saw me heart and soul.First and only man to really love me!!!!!! For me.Only man to tell me he loved my eyes,you mean I am more than breasts ,can it be?I was only a thing for my whole life.Than this man comes into my life and tells me I have a beautiful heart,he loves my lips,he loves my less than perfect body,he loves the inside me.It took me so many years to really trust this man.I finally almost totally get there,and Bam,This horrid disease is taking him away from me,minute by minute,day by day,another year.I know it is a pity party,but why me?Haven't I been without real love long enough.I learned many years ago though,that there is never any answers,or comfort,so I cry in the dark alone.

Whitewashed tombs and Holy Bologna Batman!

Thanks to someone who has helped me reach into the depths of my soul,I think I may be able to get some of this poison from my body and soul.Soul S and J,Thanks.
This is some heavy painful baggage I have been carting around in my soul for years.It may take years to get this crap out.I will start with a little today.
Someone asked me at my oldest son's wedding almost 2 year ago,Hey,I thought you were on of those "Born Again" nutcases."? To which I calmly replied,"Nope,I am a free agent,I am allergic to organized Religion which takes a Good God and turns him into something Mean,and intolerant,and hateful,and for all the Scripture they love to quote at you when your heart is bleeding,Guess what,most Christians don't live what they supposedly cram down other people;s throats.
To me God was always supposed to be about Love,pure and simple.I haven't set foot in a church since my sons wedding,because that is not what I have encountered.I have been to every denomination from Episcopalian to Evangelical ,to "Have Gospel will Travel",(no that is not a typ0)This was actually a ministry that old everyone I was the Devil incarnate because I questioned thier crap,their control over the masses,and the lambs.
I feel the most comfortable with people who have always been on the outside looking in.I don't identify with the masses.I Identify with people who have got back up day after day and year after year of being stomped on,abused,hurt,and still,they get back up and keep on going.I feel more comfortable with a real person,than someone who puts the show on for thier "cookie cutter:Christian assemblage.Put me in a crowd of alcoholics,mental patients(yes I was one once)people with Soul wounds so gaping,it is a miracle they can still function at all.It is time for the Church to get out into the real world,God is not about ,Do not this,Do not that,God is about acceptance,and love.I have never ever received that from any church ever.I prefer to listen to the still small voice when I am alone,when I am in nature.That is when I feel God the most.More to come as I can get this painful part of my past out.Peace....

Soul Sisters are we

This post is a bit of sunshine in sadness.I will not name names,but you know who you are.My Soul sister across the miles.I don't understand anything at all,but knowing you,and keeping in touch is helping me
There is a lot about God I don't have a clue about,and a lot of me is sick of being a walking wounded.So when you meet a fellow traveler of our same path,there is a kindred spirit thing going on.Forgive me if my words are jumbled.I haven't stopped crying since yesterday.Ok,maybe to try and eat(gag)all food tastes horrible now.I think of you and your other half a lot.I wish there was something I could do.I can't even manage my own life now.A lot of things have been stolen from me,but I still have my big heart,my love,my compassion.My life's pain and suffering has made me a master at these gifts.I know pain,we go back a long way,we have traveled side by side since I was a girl.I also konw love,and even through my broken,bleeding ,fractured,pieces of heart,I feel like reaching out to others who need me.Sending you hugs Soul Sister,you know who you are,Thanks,Thanks,Thanks and much Love

Raw ,Very Raw Emotion

This grief thing is swallowing me whole.I was so tired last night,but couldn't fall asleep for a long time.Had panic attacks,anxiety.I was scared last night.Very scared.Scared of losing my husband,even though the FTD/Pick's stole him from me mentally and emotionally years ago.
He is losing muscle tone and grip.I used to love holding his hand,so strong ,from years of physical labor.Now it is like holding a stick.So sad,so sad.
The only good thing about this disease,is that husband has no clue there is anything wrong.That is a minute comfort to me who is the one watching him slide rapidly into severe brain damage and brain death,and of course,bodily death in the future.
I feel lost,feel helpless,feel sad,anguish.Music is my comfort this morning.Brings out my hidden,buried emotions.I feel nauseous,sick to my stomach.My heart hurts so badly.Please God,Please no more.I can't take much more,the blood from my heart is dripping slowly away.

One more Blessing

How could I forget my oldest son and his wonderful wife,they make me so proud and happy.You are both so much fun to be around,and it is so good to feel your love for us.Thanks for treating us with love and respect.Momma...PS....Tell Katrina Mimi is waiting

Angel's on Earth

Today with all it's grief and sadness,comes gratitude and love to the people in my life who have been there for me,are helping me in any way they can.I am eternally grateful.It cannot take away my pain and my reality,but it sure helps knowing I am loved.First to my Awesome Mom ,Grace,who is the reason I am still going.She taught me how to be the mother I am,and taught me the love of reading,language and Music.Thanks Mom,I love you so much.Secondly,My brothers Scottie and Wayne,who I know love me,even when we don't speak for awhile.I love you guys so much.Better Brothers God could not have given me.
A very special Thanks goes out to My Giant Ray of Sunshine,my newest friend,but my dearest.Christina.You are God's way of letting me know,he is still there.You are good,kind,funny as the day is long.You sparkle,you light up my world(ok,start singing "Feelings")LOLOL
Sylvia another long time friend and treasure,Thanks so much.To all the others out there who have reached out to me,my heart deeply appreciates it.I love you my friends and family.

Daisy Mae

It is 3:15 am,can't sleep again.It is taking it's toll,this no sleep thing.I cried a lot last night.Spoke with our Vet.My 11 year old adopted hound Daisy Mae is going to be put down today.I know it is the humane thing,she has an enlarged heart,and she is having trouble breathing,and has a croup like cough.I can't afford to keep her alive anymore.Because of Paul's dementia,he isn't even aware my heart is breaking in a million little pieces.
For those of you who don't know me,My animals,are more than just my pets.They are my therapy,my best buds,my joy .Just 2 months ago,I watched my beloved Cato,13 year old cat I adopted when he was a kitten die of Kidney failure.I am still not over his death.Than husband's deadly diagnosis.I am still processing this and grieving.Now Daisy Mae.Daisy Mae Caruso you have been an Angel in Fur the short 11 months we have had together.YOu helped me get over my dog Dottie;s passing last year from old age.Your wonderful spirit and love have gotten me through a lot.Daisy Girl,I love you,You have been a Blessing in my Shitty life.Thank you,Thank you,Rest in Peace Sweet Girl.