what remains.

4 months ago today i lost you. 4 months ago today i lost myself. i go through these motions of life but there is no life in them. And it wasn't your death itself that brought me here, it was the journey to your death that has done it.
i can't get it out of my mind; watching you slip away. i felt at the time that i was trying to grab on to you and you were falling through my fingers like sand. i remember holding you as we lay down in your bed at the facility, it was a week before you died. you slept for hours and i held you as we both were soaked in your urine what ever else comes out in the messy business of death. you were so peaceful i couldn't bare to move you. that is all i could do for you at that point, try to give you peace. and i succeeded many times before you died. in your lonely confused tortured mind all i could do was bring you a sense of peace.
will i ever love again like i did with you...? i doubt it. i will not willingly do this again to myself. how can i? what remains of me to even do that?
 

memory

Talking to himself walking across the bedroom.
"i can't do it, i just can't. No. No."
laying down on the floor next to the bed in the fetal position.
"No, No. I can't do it."
curious and concerned.
"do what Jim? what can't you do?"
mumbling, distressed, twitching on the floor. covering his face with his hands.
sternly, "what can't you do Jim?"
"i can't. i can't stab that boy and throw him in the swamp. i can't, i can't do it. i can't kill that boy."

i'm stunned, everything goes quiet. i can't think. then i hear them fighting over some toy in the other room, "that boy" and his sister. i run to the door and shut it.

a week later i hear this episode being told to a room full of 20 doctors. i hear nothing but gasps and i turn to jim. the look on his face....
right after this meeting he tries to throw himself in front of a bus. he is so big. i hold him back at the first attempt. i can't hold him as he gets ready for the next one.
i let him go. i turn away.

a police car has pulled right in front of him.

that look on his face... at the time i felt guilty for holding him back because of that look.
i find no meaning in this memory. i want to leave.

p.clarke memorial concert '05

i was looking thru Jim's virtual folder that he kept on our computer. I found 3 documents that were titled; friends, women, and financial advice for Gayle. I browsed through them. (it's too hard to read them just right now)
anyhow i found this in one of them:
                    I plan to play another concert, solo piano material, on April 22, 2005, and I hoped he would still be around to attend.  I will put an empty chair on the stage, to symbolize Phil sitting there, watching my playing.  Current plans for content:  Schubert  impromptu Beethovenís Waldstein Piano Sonata #21 (which Gayle likes a lot), Schubertës Wanderer Fantasy; end of first half; second half:  3 works of Chopin: 1st Ballade (G Minor), 2nd Scherzo, and 6th Polonaise (Heroic); and concluding with Gershwin Rhapsody in Blue. Planned encores, if requested, will be Debussyís Clair de Lune (a favorite of Maria Avila), perhaps a Joplin Rag, perhaps Schumannís Traumerii (translation "dreaming", based on a Scottish lullaby).  Perhaps also a Gottshock work, for my new piano teacher Dr. Maria Goodman.  


Jim used to play recitals without the music in front of him so everything was memorized. That means that I would have to listen to these pieces almost every day for about 4 months. I used to hate it at times. Now i would do anything to hear them coming from our Steinway....  If i hear recordings of the Polonaise that is mentioned above or think of it i will start crying. I remember the last time jim played Clair de Lune, it was about 2 weeks before he forgot how to play. he played it for his friend mike. i was in the living room quietly sobbing. i knew that was the last time i would hear him play. and i swear i will never hear anything more beautiful in my life. anyhow, his writing goes on....


      Update May 2005; Dr. Goodman dumped me as her student; said she didnít have the time.
The concert went OK, though I got lost a couple of times in the Beethoven Sonata, the work I thought I had memorized well enough, so I didnít really practice it enough.  I used the music to play the Schubert Fantasy, so that went OK, even though having the music I still got lost a few times in that.   The 2nd half, 3 works of Chopin and the Gershwin Rhapsody went well.


I remember this recital, and he did use the music in the Schubert. i remember thinking that it was a little off. maybe it was an early sign of the dementia. the other mistakes were minor and he went right through them, only a handful of people at the recital would have recognized them. anyhow, reading all of the titles and his recap on the recital brought back some memories that i didn't want to forget.

Halloween

                                            Jim & Arwen 2009

I was so sure that this Halloween would be a day without crying, sadness, and pills. I had everything planned the house was decorated. The "holidays are hard" all the books said. "bullshit", i said. not me. i was gonna take this holiday for my own. Then out of the blue it happened.

Grief came trick-or-treating at my door this Halloween. He will undoubtedly be an uninvited guest at my Thanksgiving table and honor me by leaving me the biggest present under our Christmas tree this year.

right now i hate that you left me. i hate that we were decades apart in age. i hate that i have to go to another memorial service and hear how great you were. i hate that i have to wait another day to be with you again. i hate that i can never watch star wars again and not cry. i hate all those times i told you i had a headache. i hate that the tears won't stop. i hate how i collapse on the floor at night and can't get up. i hate that i have to go pick up your ashes soon. i hate that you died.

acknowledgement

This is the last printed card that will have all of our names together on it.

official

 A giant Forest Lawn envelope came in the mail yesterday. I was a little perplexed as to what could be in it. A giant thank you card for spending thousands of dollars on a funeral, a brochure and advanced planning kit for my own funeral, an itemized list on charges they forgot to add... Then it dawned on me, its the death certificates. shit. I prepared myself for the breakdown, opened the packet, searched for the cause of death... and there it was.

A sudden sense of satisfaction came over me. Damn right, that is what took him and if they had put heart failure or something else, as they frequently do with most dementia's, I would have been pissed. I don't know why, its not like it would have mattered. but it strangely did matter to me, I fought and paid for that diagnosis. When the doctor told me that this is what he believed my husband had I felt like i wanted to fall apart and kiss him at the same time. finally fuck. somebody was listening and giving a shit, not just giving up because they didn't know what was wrong. no more of him coming home with Levitra for his "issues". no more of the stigma of having and assumed mental disease-- a "real" disease of the brain, a part of him was dying and his behavior was now...forgivable? no. accepted? no, i don't know what i would call it. but the diagnosis did make a difference in the way he was treated when he had done something appalling. nurses, firemen, police, et cetera no longer were short with him, their tones had changed with him when I told them what was wrong, they took time to listen to all he had to say, a look of pity was on their faces when they interacted with him, no more cold blank non judgemental stares at him because it was part of their job. --and now its permanent- printed on fine, engraved, embossed, and digitally signed paper. This disease that designated my husband and gave me a strange feeling of satisfaction every time it was said or typed now really means nothing. it doesn't matter anymore.

the last days

It was a on a friday night that he was taken to the ER for a check up. His leg wasn't getting better, he appeared to be having small seizures. The ambulance pulls up and he recognizes me. He smiles. ....wow, this is hard to write... feelings of rage, pain, sorrow, are brewing and bubbling up inside ready to overflow.
I'll just stick to the basics. I had texted my friend from the hospital that I could swear jim was dying.- That was on Sunday. On Tuesday  I was asked if they could test him for "mad cow" disease. I said "no more pain, give my husband a pain patch and something for anxiety". I'll call hospice, the doctor said.
The hospice nurse came late afternoon that day. She looks at jim, "wow, he is actively dying. I wasn't told that". she leaves the room and is on the phone. I just think "no shit". I knew this was coming, after telling everyone till i was blue in the face that he wasn't going to last the summer. and now it was clear to everyone else. I had had his last rights given the night before and now i needed him to get home. fast.
I got him home on the next day in the afternoon. I was told he would last 2 weeks or more. I told them he wasn't going to make it thru Friday. They smiled and said they had seen this before. --and i gave up, nothing in me could fight anymore. I just said okay, and agreed that the doctor, social workers, home health aids, ect. would come on Friday.
That night my brother went to get the morphine. it was late and he was very tired but i said we needed it tonight. At 5:00am we gave it to him, I made the calls. Everyone said that they would come later in the morning, that it wasn't time. At 6:30 am Jims heart stopped, you could actually hear it stop beating. Then the last breaths came.
--alot had happened in the last days that i just can't write about right now. Jim was alert, his eyes had been fixed and glassy since that Saturday. but he could kiss you and talk.

-this post isn't what i wanted it to be. but it is all i can give at the moment.-

uhhh

I came across this ugly sweater Jim is wearing in this picture today. It was buried under old clothes that Jim kept from college. It looks like a warm sweater, made out of thick wool...it is also now saturated with my tears and snot.

Why life is like a bowl full of cherries

My sentiments exactly. I wish i had this little girl with me to respond to everyone who contributes to letting my husband live the last months of his life as a caged animal.
to tired to rehash the details. but i totally feel alone in this and pissed today.

Not Surprised

"yes, we think your husband is hospice appropriate. However, we can't accept him because we can't guarantee our caregivers safety"

for some reason being told this today hurt more than when i was told that jim had bvFTD.

Waiting

Waiting in the ER. Jim has an infection in his leg. He won't get here for another hour or so.
Why did they not send him to the ER when I asked them to?
What if it is bad? Do I let him have antibiotics? Waiting. What if he just sprained his ankle and there is nothing to worry about? Waiting.
Who can I call in his family to update them? Who would come? Waiting
Why do I feel nothing?

daddy loved you dorian.

" I am alone. (toss that) I am utterly alone. By the time you have read this I will be gone, having jumped having plummeted off the winter river bridge"

Okay, that's not for real, it's a quote from Beetlejuice. But that is what i felt like on Saturday, not the suicide part of it but the despair feeling you get from watching that clip. So basically saturday sucked. I was really grieving, i guess the word is. hard to explain the feeling and even more hard to know someone who has had the unfortunate experience of feeling the same way. which makes grieving seem even harder to get through.
sunday was better. took arwen and dorian to see jim. dorian ran up to him screaming "DADDY, DADDY!" but jim just sat there unresponsive and drooling. those words used to be followed with jim opening his giant arms saying "Dorian, my Dorian!" and when i say used to i mean a month ago. anyhow, so dorian tried to get his daddy's attention by offering him m&m's (jims favorite) but still no response. i even saw some people turn away when dorian said "wake up daddy, wake up". I kept it together for the kids and rubbed jims back and head. we soon retreated to the living room area so that i could explain that daddy was really tired and that is why he hasn't said anything. dorian said "okay momma, maybe he wake up soon" ; arwen just looked at me like "yeah right".
well i really don't want to remember much of this visit later on so i'll just say that by the time we left dorian had gotten a response from his daddy and i didn't have a break down. there.

we stayed with sarah and the twins that night. justin was on his way from washington. it was fun and a needed break.-- its so empty in this house without jim. it feels like i am lost.

Realization

While lying in bed staring at the ceiling this afternoon (kids were taking a nap) I came to a strange realization about myself. NOTE-this is not deep, i attribute it to the pills i take.

Anyhow, I've always thought those people in the zombie movies who keep their afflicted loved ones chained to the wall, or chair and feed them bits of once living things were nuts. Or down right fucking crazy. I mean what is the point of keeping them around? First off, whatever made them who they were (their spirit) died, and secondly, they might or will kill you when they get the chance. So they should obviously get the hell away from them or make it so they can't kill others (basically just kill them).

So when i think of what jim (or what was left of him) & I have been through in the last 7 months i realized that i am that fucking crazy person or at least was. Jim was sick with no hope of return and i was seriously putting myself at risk. I was choked, hit, almost raped, ect. by a loved one who was losing his brains. It was rational to have him placed in a secure facility. But every time he was released from his 5150 holds i fought to bring him back. Why? That's fucking nuts. He could have killed me if he wanted (he is 6'6" and i'm 5' nothing). Was i crazy? did i think i could bring him back? would i follow him to the ends of this earth? did i? --I did not act rationally then and knowing that is what is holding me together now.

Strange days

Dropped Jim off Tuesday at a memory care facility.
OFFICIALLY singed the papers. No tears. No sobs.
Slumped over signing things. Hearing in the background "it's best for your kids, it's best for your Heath" looking up from my slouch I stare at her, she smiles. I look back down at the contracts and wish she would leave and give me a moment.
It's a big deal signing these documents. I'm giving my job to someone else who gets payed with money. My pay was the gift of knowing what true love is.
It's a ripping apart of our lives, we have been living around daddy's illness. Everything we do goes around daddy's schedule. Now I sign these papers and he becomes apart of their lives. They live around his schedule. Strange.
I signed them, I walk to see him. he was jovial, I was....nothing.

so sorry jim

well, i started having problems with speaking today, so weird. I called my Dr. and he said it was stress and told me to take an ativan and to seriously try to place jim, that my stress level is getting too high. So, I called the place where jim goes for respite care and told them that i will be bringing him in the next day.
Oh man, this sucks. I love him so much. and the thought of him sitting alone thinking "where did they go" "why did they leave me" really tears me up inside. The place is an hour away and will cost $4350 a month. But its the only one i could find that will take him that doesn't cost over $6000 like most nursing homes do.
But I need my kids home and my stress levels to go down. I've spent the past months being locked in the house with him. cleaning the floors when he refuses to wear a diaper, bathing him in the shower, sitting with him, he is my shadow, fixing all the messes he makes. and now i place him...I'm sorry Jim, I did the best I could. But this is whats best for us now. I will not give up on you. I will bring you back so that you can spend your final days hearing Clair de lune being played on your Steinway that your dad bought you and listening to your children play. I know that where ever you are you would be proud of me and would have wished that I let you go along time ago...I love...i miss you...