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.

Waiting for Peace...Yeah Right

Last night was a terrible night with hubby.For hours he will not speak,just watch hours and hours of tv.Than,all of a sudden he turns into a monster.It is the nature of Pick's disease,a type of Frontotemporal dementia.I cannot sleep ,except cat naps here and there.I am trying with my very limited resources to take care of myself,hah,that is a joke.I have tons of people telling me look at the bright side,hope your husband gets better,blah blah blah blah.
Guess what folks??! Hubby has a terminal disease.Pick's is a fast progressing dementia,mostly affects people between the ages of 40-60.
The only light at the end of my tunnel is an oncoming train!I used to be such a positive person,I was the eternal optimist.That was before age 13,before the abuse by my father,and other men,before constant anguish,and other traumas I don't care to go into right now.
So,I give birth to 4 sons in 6 years.These boys,now men,are my greatest accomplishment in my book.I loved raising them,I did everything with them and for them.They are all grown and on thier own now,3 are married.
So in my pea brain,I thought,Wow hubby and I will have so much fun,get to finally walk around the house in our skivvies.Go places,do things.Lots of romance.
Three to four years ago,Paul stopped sleeping in bed with me.This was a shocker for me.We had always been cuddlers,super affectionate with each other.In the beginning I begged ,I pleaded,I asked why?No logical answer.He just made the Family room sofa his new home,and I slowly and painfully learned to sleep alone.Of course my cats and dogs keep me compay.I do miss greatly the hand holding in bed,the way my husband and I would talk in bed until the wee hours of the morning about everything and anything.
Not that sex is everything,however Paul and I always enjoyed our sex life.It was another way of showing each other our love.The past 2 years,practically no affection,no sex,no emotion,no love.
The past 9 months it has gotten even worse.I still try and touch Paul,rub his shoulders,hold his hand,kiss him,it is like giving affection to a piece of granite.
I love him no matter what,but these days because of his Jeckyll and Hyde persona,I have to admit,I hate him too.
Go ahead you "Holier Than Thou" types.You people out there whose life is a storybook of constant bliss.Judge me and my bitterness if you will,but guess what.I Don't Care!
All I ever wanted were the simple things in life.I am a giver,a lover ,compassionate.Now I finally think I can have just a little bliss,and now this disease has taken everything.
I had knee surgery 4 weeks ago,because hubby can't do anything around here anymore,guess what?Right after surgery when I was supposed to be taking it easy,I had to do everything around here.I have arthritis in my hands,and my body,I have developed a severe case of Psoriais,my Exzema has come back with a vengeance.
I am tired,I am more than tired.I feel like a Semi truck has run me over flat,and than kept backing up over me again.How much is one person supposed to take.
My best friend,my lover,my support system,my provider is gone.His disease is progressing at a very fast clip.I would be surprised if he lived another year.
On top of all this shit,I am going to lose my house,and in the midst of all the millions of things I have to do ,legal stuff,house stuff,medical stuff for hubby and for me,look for a new place.Going to Social Services,etc...
So at 46,guess what.I have never felt more heartbroken in my entire life,and I have had a lot of heartbreak.I am in such turmoil.I am not afriad to be alone,but I feel so cheated out of this Blessing of a marriage I once had.I am angry my husband has this Pick's disease.He won't even get to know his new Grandaughter .YOu know what I need instead of platitudes and positive affirmations?I need people who will shut up and do something to really help me.I need people to show their love in action,not Scripture quoted at me like a Sunday Sermon.I will tell you what I would like to do with their Scripture!
There are a few good souls near me,who have been helping me as they can.I am very grateful.My mom and my brothers are very supportive and loving,Thanks fam.My oldest son and his beautiful wife are the light of my life!Can't wait to see Katrina Grace in March.First girl born in the family in 46 years.
My 2 middle sons and their selfish wives,I have given up trying to figure out why you are so cruel to me,I need to take care of Paulie.My youngest son is a good soul who happens to have a lot of problems,so he can't be of help to me either.
My therapy are my cats and dogs and my pond turtle,Homey.They are the reason I keep on keeping on,they depend on my daily.If I feel like laying in bed all day because my heart and my body are wracked with pain,I must get up,The pets need me.Paul needs me.
I am tired of hurting,Physically and Mentally.I am just plain Tired.Enough God,Enough already.

Manic Monday,or Hell on Earth

I am going to try my best to get all this crud out of my brain,bear with me,there is a lot of crud these days.This disease,FTD for short/Pick's disease robs the person of any rational thought,actions.My husband had been showing symptoms as far as I can remember 3-4 years ago.
In hindsight,I can see other signs and puzzle pieces,and questions about why this man I knew better than anyone,was gone overnight.

The Neuro warned me,"It is going to get much worse,quickly." I knew this from all my hours and hours of research.Having said that,to hear my husband of 23 years accuse me of wanting to put him away,and steal his money(hahah we don't have any)To look at me with evil intent,and talk to me like I am a piece of garbage and a stranger,pains me more than I can say.

I know it is the Nature of the disease,it does not however,make it any easier to deal with.
My husband is Paul,once a boxer in his youth,house painter extraordinaire up until a few years ago,my pal,my comfort,and now my worst nightmare.

I had these fantasies of when all 4 of our sons were grown,we could finally have alone time.You see when we married,we had a ready made family.My 3 sons from first marriage,his 2 from his first marriage.Alas,this is not to be.
I need to sell my house and move soon.I am going to move 1 hour south of where we are not,due to his Neurologist and excellent hospital there,and lots of support services,which I need.

I am usually a super patient person,I have a long fuse.This afternoon after listening to hubby rant and rave and treat me like shit,I lost it,I mean lost it.I told him I wish he would go away.The cauldron of anger spewed forth like a geyser.I am not proud of myself for it,but I am human,and I can only take so much.
I have always had a love affair with food,and as someone who has had clinical depresion her whole adult life,I used to use food as my comfort.Guess what?One tablespoon of food makes me feel sick now.I have to write myself notes to remind myself to eat.

Unfortunately for me,my beloved PC is in the Family room where hubby has taken to sleeping the past few years.It is driving me CRAZY! New residence,the pc is going in my room,away from his 10 hours of Law and Order and every 2 minute channel switching.My brain feels like it is going to explode.

IN the past several weeks he is speaking less and less.Yes,this is a good thing at times,but you see.We used to talk about everything together,so I find myself going to tell him something,and stop myself.
My heart feels like it is bleeding,I have cried more in the past few months than probably my entire life.My heartfelt thanks to J Paravane who inspired me with his writings about his own personal hell with Dementia.Thanks Jimmy.

My 53 year old husband has Frontotemporal dementia

I just turned 46 in December.My husband of 23 years,53 in November.Four years ago or so he started doing things and acting ways that were totally out of character for him.Fast forward to now,he is dying ,his disease is progressing rapidly.He has Frontotemporal dementia/Pick's disease,the rarest of the dementias. I don't know what else to do besides cry,care for him,make legal arrangements,take care of all the household stuff.
Our love was the stuff fairytales were made of.We met both battered from previous marriages.I had a very rough past,so did he.The first 2 years we were together I couldn't believe that this miracle happened to me.
We had our ups and downs,but we loved each other's company,we laughed lots,we never had much in the way of material things,but he was my soulmate.My protector,my lover,best friend.Now,he won't hold my hand,doesn't sleep in my bed for the past 2 years.He barely speaks.He doesn't bathe or change his clothing unless I help him.His dementia though is the agressive kind.He has poked my face twice in the past month because he didn't like my answer.H grabbed my chin hard 2 nights ago,because I wouldn't french kiss him,even though he was purposely drooling like a child.
Welcome to my world,or what is left of it.I have never put material things and worldy goods at the top of my list.I love a good person,and pure soul,over a tropical vacation.We are losing what little we have.Our only house of 14 years,is going.We have no savings,never could,raised 4 sons on a painters salary,so I could be a stay at home mom to my 4 sons.After this month.no more health insurance.
What I mourn the most though is the loss of the relationship I had with my husband Paul.I miss his affection,his laughter,his sillyness,his huge heart.
One of the things that made me fall in love with him all those years ago ,was that as masculine as he was ,he was sensitive and soulful and wasn't afriad to cry.He has treated me like a princess,made me feel that I was worth more than diamonds.
I am mourning,someone told me recently that ot live with this Frontotemporal dementia,FTD for short is like Death by a Thousand Cuts.Hence the title of my blog....Debra Lewis Caruso