It was a crash and burn kind of day

For both of us, I think. John has really spun out of control. He swore at the nurses, tried to kick one of them, got really mad at all of us, although he's calmer with me. The poor PT people he practically threw out of the room. Then he threatened to kick me in the ass and I laughed at him - I told him it would be an all day job, so he better pack a lunch. :) Then I scolded him for not treating the nurses better - eventually he felt remorse. Not much though.

Emotionally, this takes such a toll to handle. I am in hiding tonight. Watched "Touched by an Angel" for pete's sake. But, a good thing I think - the end message "Your Father is always there"...

So the question becomes, does God guide us to watch corny shows like Touched to hear a message He knows we need to hear? Or, was it just coincidence because I needed a pick me up show?

God works fast sometimes.

It was a "Susan has left the building" kind of day

Ahhh, how wonderful to not worry about John all night long and to get up and take care of me and the dog.

I took only one phone call yesterday - sent the rest to messages. The call I took was from John at the hospital He was lost and wanted me to come and pick him up. Sorry sweetie.

Was this a hard thing to do? Not as hard as I thought it would be. I said a prayer for the nurses and for him, in that order. Had a 2nd beer. Went to bed.

One would think that the trip to Italy would still be carrying me through. Probably it would if John were still in the same condition I left him in when I went to Italy. But this last month has been such a 180 degree spin...and keep spinning...one moment up, then down, then up....Oh wait - that's the roller coaster ride in Lewy Land. I thought I recognized that condition.

These blogs have been my way of thinking through what is going on. They help me focus so I know what to ask for in strength and courage and wisdom. Some would say it's prayer, some would say it's meditation, some would say it's just the brain sorting things out. The odd thing is, I've never been a person to journal. Why is this so much easier?

One thing that is clear though. What ever you call this, and I'm calling it prayer on the keyboard, the answers come. They change sometimes from day to day, hour to hour, but the answers do come. One just has to sit still and listen for them.

It was a God kicking me in the butt kind of night

I have been questioned and have been questioning what would God have me do for John during this time.

I have tried to live my adult life by three principles found in the Bible, yet I know many atheists who live by these codes better than many people of faith that I know.

From the old testament: Micah 6:8 - What does God ask of you, but to love your God with all of your might, to walk humbly and do social justice. From the new testament: Matthew 7:12 (and also Luke 6:31) Do unto others as you would have them do unto you. And the great commandment from Jesus in John and Luke "Love one another as I have loved you."

It's a pretty simple theology, yet almost impossible to live by.

What would be justice for John? What would I have him do for me? And what would be the greatest act of love?

The answers become amazingly simple, don't they? But because I am human and cannot stand to hurt another person, it is not that easy. This is the long good bye at the train station. I cannot bear to part from him, yet know if it were me, it is what I would want. It is the greatest act of love to let go. Let God do this. So, I ask God to give me the strength and courage to get me through these next weeks. John will not die these next weeks. Probably not even these next months. But knowing God's hand is here will help guide me through this next era.

It was an Every which way but loose kind of day

I'm not even sure where to begin this post. Last night, John was trying to convince shoes to jump up into his lap and got mad when they wouldn't. Then this a.m, as I was trying to get him into the shower, he got so mad at me, I really thought he would hurt me. I threatened to call 911 and have him hauled away. God bless his heart, he stopped and came back to apologize. And tonight I stopped him from running down the hall in the condo in just his underwear - he had to go upstairs to go to bed. He thinks he's back at the house.

We spent the afternoon with his LBD doc at Mayo. The Doc was shocked at John's decline in the last three weeks. That's putting it mildly for me. I've gone from a semi-functioning, semi-rational adult, to a 3 year old. That would be John, not me.

My intention going down there was to have him hospitalized to pull him off of all drugs. But the good doc convinced me to just pull him off the anti-depressant and the anti-psychotic and do it in a hospital. YES!!!!! But to look for any underlying causes first. While we were there, I found a lump in his neck. Could be muscle, could be lymph node - whatever, it needs to be explored.

So. I left this morning with my gut tied up in knots. Is this a sign that maybe there are other angles to consider? Does our gut act as our conscience? Is it God's way of kicking us and saying keep your mind open? The truth is, and anybody who knows me real well will tell you this, I cannot on purpose hurt another creature without a purpose - like butchering turkeys and ducks, cleaning fish - purpose there, I eat those things. But to kill a mouse? Nope. I'm still second guessing having put our cat down at the start of summer. So how am I to start the process of letting John go, knowing the torment that this will cause him???

I've longed believed that the medical community plays God at a time when we should hand over that role to where it belongs. I believed it when my dad died; I especially believed it when my mother-in-law died after they did experimental surgery after experimental surgery while she was dying of liver cancer. Hospice at least let her rest. There was a point with her when we might have prolonged her life a while longer with a Vitamin K shot, but it would've been for our benefit, not hers. I so wanted her to see the baby - she died a week before Nick was born. So obviously, we opted not to give her the shot. She was ready to go. She'd had a stroke while in my arms a few days before she died. She was more worried for me than for her. God bless her.

Letting go and letting God has it's downside and it's slapping me in the face pretty hard right now. So, I think my gut was saying there were too many "What if's" still to explore. When we've exhausted those, will the answer be any easier?

It was a call your bluff kind of day....

So this morning, I waxed poetically about not protecting John anymore. Who was I kidding?

I had all of Dian's cats in the house yesterday which was good, because I promised to bring home two of them. Those guys are escape artists and once they're out, forget about tracking them down until they're good and ready to come in.

In the back of my mind, I know that if I'm smart, I need to kennel the two we're bringing home so that John doesn't let them out, except, that's a long time in the kennel before we leave. Well, guess what - John opens the door and two get out. One of which needs to stay in.

I scolded him about it. He said he wasn't aware of this, yet I had told him of it. The next thing I know, he is climbing up the rails of the deck to leap off and catch a cat which wasn't there. I yelled at him to get down from there and get back into the house and stay there. So much for not protecting him anymore.

Which maybe I should have let him jump? Maybe I should have let him pull the keys out of the ignition too. No..instinct does take over.

But, that wasn't really the protection I meant, was it? I meant, if I need to leave him alone, I'll leave him for an hour or two. But will I take him back to the farm? Not a chance. Not because he is a danger to himself and me, but because I was so upset by the time I got that the fun I had was wiped out.

It's a ANSWER THE CHICKEN PHONE kind of day

Maybe one of the dumber things I've done is bring him to Dian's farm yesterday. She's not here and will probably not have me back - I hit my car with the golf cart and rode the John Deere with a totally flat tire. John was talking to a chair that nobody was sitting in and not making a wit of sense anyway.

So, I came to the conclusion in my head at church yesterday, what are you saving him for? Why are you afraid to leave him alone? What's the worst that could happen? You're getting ready to put him in a nursing home and you want him perfect for that? Are you afraid of using him up?

I do that with food sometimes. I get something really special and I'm afraid to use it all up. I had a big can of Ghiradelli cocoa that I brought back from San Francisco in the early 80's. It was a wonderful trip that John and I had taken - his was actually a business JUNKET so I got a lot of time to myself. There was about 2 cups left in it and I couldn't use the end of it because then it would be gone. I finally threw it when we moved two years ago. I save stuff because I'm attached to a wonderful memory of it - I do it with food, and now I'm doing it with John.

Of course, I do it out of love for him. I don't want him hurt and sad and confused. But he's already sad and confused. So, in a few minutes, I'm going to fix some breakfast and head outside. Ricky, the rooster, has been crowing non-stop since day break. The last time John was here, Ricky was crowing outside of the bedroom window in the midst of an anxiety attack John was having and he wanted me to "Answer the damn chicken phone". Hang on Ricky.

It was a YOUR IN kind of day...or maybe GIVE IN kind of day

Actually, that would be URINE kind of day. Miss Xena has a mini-lou on the balcony that gets washed with a bucket of water at night - that water gets filtered into a holding tank and I spilled it, releasing that smell on the balcony....several buckets of water on the balcony later.....

John got his schedule confused yesterday by going to bed at 2 in the afternoon. When he got up at 5 and supper was ready, he was totally lost. After supper, he asked for coffee and I refused saying he'd be up all night, so he got a can of soda anyway....uh oh....is right.

So, as usual, I'm up late enjoying my quiet time and got out to the balcony for awhile. When I went to bed...well, there was that smell again - hit me full force. There were his pj's on the floor by my side of the bed, a wet spot on the floor, folded laundry all over the place.

I checked him - no clothes on from the waist down. "Do you want some dry pj's" "No, it's ok"...So I go to bed...Lesson #2 (if you lost count, #1 was soda is the same problem as coffee) #2 PUT THE DRY CLOTHES ON HIM ANYWAY.

At 5:30 this a.m. he gets up at least 3 times to find dry clothes. I tried to ignore this, but I'm in this now, just watching to see what will happen. "It's raining" he says (It's not). "DSDJLFJSJL" which is my interpretation of whatever jibbish he was speaking. He's now sitting up speaking non-sense. Then he'll pop up and check the commode, check the drawers again.

So -I finally give in. After I get him dressed, I gave him his pills, I held his head for awhile. Calmed him. Wrapped him back in the blankets and asleep he went.

Lesson #3. Give in. Let the forces take you where they must. Set aside your needs, his needs are worse. Remember that he is afraid and in need of comfort. Your needs are for simple things like sleep. His cannot be defined. His mind doesn't know what they are.

It's a whiplash kind of day

Or a WTH kind of day. Take your pick.

After a day of watching him want to do something all day - I mean this puts ADHD to shame, he washed dishes last night.

When I say ADHD - he cannot sit still. He walks around and around the kitchen island. He finds his keys and tries to head out the door. He mutters things that have to get done - it's totally unintelligible; but, still, in his mind there are chores to do and he must do them.

I gave up about noon trying to get him to sit down and relax. I upped his anti-psychotic at lunch time, to no avail.

All I can tell you is Pastor John came to call late in the afternoon and it had a calming effect on him. Afterwards, John sat and watched TV. He ate. He got up and washed dishes. And I let him.

That's the key, isn't it. Letting them go and stumble if they must, like a toddler. What's the worse that can happen? He gets hurt? He injures his brain? He winds up in a hospital? I remember letting Nick run down the sidewalk when he was little, knowing the inevitable would happen - there would be a skinned knee and a little more caution next time. There won't be more caution next time because John won't remember what happened. He has all sorts of fantastic stories about how he got the gash on his head Sunday night. None of which are remotely true, of course, but I love to see how his brain operates.

So, it's whiplash in that one's head whips the other direction so fast to see who/what this person is today. But it's also a letting go kind of day.

Where do we find love?

Today is a "find a nursing home" kind of day. I came home from settling my son into his new digs

Where do we find love?

Today is a "find a nursing home" kind of day. I came home from settling my son into his new digs in another town last night. John's older kids had been baby sitting him while I was gone.

John no longer knows who he is. In his words "John Marsh left because he was too afraid. My new i.d. hasn't been assigned yet." Well, who assigns these things? "Those people." There are people all over the condo that he is hiding from and trying to escape from.

My heart wants to keep him home. My head knows that's an insane mission. My heart wants to keep the cabin. My head also knows that's an insane mission.

So where do I find the right action to take? I believe in love and I believe in duty. I love my husband with all of my heart, but in his words, John ain't here. So who do I love? This shell who lives here, shares my bed, is scared of his own shadow?

Where is duty in all of this? Duty to whom? Meem? When saving someone, don't make a second victim?

True love is the ability to put someone else's life before yours. Where does that fit?

It appears I have more questions than answers.

It's an ER kind of day

So much of my life is centered around the health, or lack thereof, of my husband. How we travel, if we travel, when we eat, what we eat, what shows we watch...the list goes on.

Today is an ER day. John's health over the past week has deteriorated so badly that it was time to have him checked out for blood levels, hydration, infection. Anybody who's ever been to an ER will tell you, it's a lifetime of waiting. Thank God for the Internet and its accessibility in the hospital.

When you have a loved one who is seriously ill, you learn to gauge yourself. One day at a time, never set anything in stone, be prepared for the roller coaster ride that his illness is. Try not to get on the roller coaster with him.

That's so much easier said than done. When he's calling me names, that's not hard. When he says I've killed the children, that's not hard. But when he accuses me of not caring for him or about him, that really pisses me off.

So, the calmness of the ER is not a bad thing for me today. Compared to almost having hot coffee poured on me this a.m., I'll take it. It's all a matter of perspective, no?