On Calendars, Island Time, Bats and Twins...and saying goodbye.

For those of you who have read my blog in the past and are not aware, I am sorry to tell you that my sweet boy passed away January 2, 2012.  That's 1-2-12.  Just keep in mind, his birthday was 11/11/11.  He died two days after his Twins Calendar ran out.

His last 6 months were not pleasant, yet had incredible moments of sweetness to them.  His ability to communicate was gone, for the most part.  His violence would come and go.  His ability to stand up deteriorated.  He was down to 130 pounds.  And yet, we held hands.  When I would get there, the look of relief on his face that the cavalry had come melted my heart.  All of the things that used to drive me nuts I can no longer remember.  He became my sweet boy. 

His funeral was uplifting for me.  We celebrated his life.  It was not a tragic death, it was horribly sad that he passed, but not tragic.  John had a shirt that said "I'm on Island Time".  After he passed, I put a tag on it that read "John is on Island Time".  And that's how I think of him.  At our cabin on the island...taking care of the spooks up there.  ;)

So, here's what I will leave my blog with.  The night before my dad passed away, I sat in their living room which overlooked the Minnesota River Valley.  It was hot.  About 100 degrees outside.  And I asked God for a sign that all would be OK.  And a bat came outside the window and hovered. 

Well, I needed a sign this time, too and asked for it again.  And again.  Nothing.  Until last night.  It's time to pull the plug on the outdoor Christmas lights according to our condo association.  So, without looking to carefully, I reached into the outdoor electrical box and felt something squishy.  And shrieked.  It was a dead bat..although I didn't know it was dead at the time.

My first reaction was "Where the hell is John when I need him...he'd take care of this for me."  He'd say - "wait until morning, it'll be gone and you can tighten that box up."  And then it hit me.  It's too cold for the bats to swoop and hover.  But somehow, with the weather warming, one crawled into a space that John knew I'd have to touch.  Asshole.

So, my next question becomes why am I being sent bats?  I am the most afraid of bats of any living thing unless they're sleeping.  Because, my dear girl....you need not be afraid of what scares you the most.  You are being taken care of and watched over.    And it will be alright.

It's a reflecting back on the last year kind of day.

A year ago, John and I made his last trip to the farm.  Dian was on vacation, the grass needed mowing and the garden tending.  Today, I made that same trip, for the same reason, but this time alone.

Looking back to that trip, as crazy as it made me, I now see it as a watershed moment in my life.  It opened my eyes as to how sick he really was and to the fact that he couldn't be left alone anymore.  I had to make some decisions and quickly, as September was staring me right in the face.  How could I go back to school?  Well, we know how that turned out.  John is fully into stage 4 of a 5 stage disease. There's no predicting how long stage 5 will last.  If anybody thinks they can tell you, they're full of you know what.  The very nature of LBD is it's unpredictability.

The very nature of life is it's unpredictability.  This has been a year of loss.  Not just John to the nursing home, but more tragically, my dear nephew, Tim.  Then there's the "STUFF" like the cabin, finances, my life....meh.  Whatever.  It's stuff.  Buddhism teaches you that suffering comes from attachment.  Try not to get attached to "STUFF"....

But it's been a year of great gains for me as well.  I have found strength and acceptance.  To be sure, you take life day by day.  Shoot, at the nursing home, things can change in a heart beat, so taking it minute by minute when I'm there is the path to peace.  One minute he's calm and sweet and the next minute he's threatening me with a tootsie pop.

Understanding the role humor truly plays in my life has also been a gain.  Where would I have been this year without that 9th graders' sense of humor?  When he's got a latex glove on his foot or his shoes don't match and they're on the wrong feet....then there's the stuff I won't publish, but crack me up as well.

Allowing myself to grieve has only really just started this summer.  I think it took awhile because I've just been too caught up in dealing with all of the busy stuff of caring for him and working.  I think saying goodbye to the cabin in June opened the flood gates.  And they're not just moments either.  Pity parties like that take a while to kick all the guests out.  Shoo!!!  GO HOME!!!!

Centering myself in prayer and meditation takes awhile.  But fixing my heart and head on what needs to be done to live this life abundantly as God would have us do is my to-do list.  Each and every day.

I hope that you, too, can find peace and understanding....

It's a reflection of the last year kind of day.....

A day in the life: It's a taking stock of self kind of day

A day in the life: It's a taking stock of self kind of day: "Ever since I joined the LBD Caring Spouses group - which was several years ago, I've been telling spouses to care for themselves. This is s..."

It's a taking stock of self kind of day

Ever since I joined the LBD Caring Spouses group - which was several years ago, I've been telling spouses to care for themselves. This is so much easier to say than do when you have a patient at home with dementia. The first couple of years go ok and the spouse still has somewhat of a life away from the home, but then comes that day, either gradually or like a bomb, when the spouse comes to an understanding that his or her life has to change dramatically. The understanding that you are now housebound 24-7. To leave the house means not knowing if your spouse will even still be there when you get back, and if he or she is, what will the house look like and what will be hidden. Looking back at last July just kind of brings it all back: the peeing on the floor, trying to jump off of my friends' deck, opening several cans of soda at one time, throwing out knives, hiding things. Oh man. I can laugh about it now...

Then there's that first stage in the nursing home. You have to give up control of just about everything....his medications, his sleep schedule, his eating - all of the things you have worked so hard at these past few years. Your life was dictated by his pill schedule and then eating schedule because the pills and the food have a set rhythm to it. But you don't give up, really. You watch like a hawk those first few months. You go to see him or her every day and spend two to three hours each time. You eat Lean Cuisines because you get home and are too tired to cook. Your life becomes defined by going to work, going to the nursing home and going to bed.

And you're reinforced by your spouse to show up every day, because that first time you don't go, he goes bat shit and winds up slugging the nurses who call the ambulance and send him to the hospital. Later, they figure out to call you first and you go over at any time of the night to calm him down.

But eventually, the nurses and you figure out what works and you start to ease back a bit. Not too much because the first time you take two nights off in a row, he asks you for a divorce. Fortunately, the cookie lady walks by and his attention gets refocused. I'm telling you, the nursing home and the junior high have a lot in common.

It's almost a full year since we first hospitalized John and then put him in the nursing home. Looking back to our last night sleeping in the same bed, I can't remember if I slept that night. And thinking about those first few months in the nursing home, I still wondered if I could bring him home.

Well, I know better. It's only difficult to accept because he still looks like John and once in awhile he's aware of what's happening. But I know he's where he's supposed to be. And so, it's time to take care of myself and not be defined by going to work, then the nursing home then to bed. And good bye Lean Cuisines. I have moved on to a great extent. I decided at Christmas to start doing things which bring me joy. So, I bought a ukelele and joined the Twin Cities Community Gospel Choir. I'm not doing so hot on the uke, but God surely kicked my butt into that choir. Not only does singing Black Gospel music fill me with joy, but the prayers offered by the director are so centering. And there are people there with far worse stories than mine and so I'm reminded how good I truly have it. I have shelter, my health, a good job that I actually love, fabulous friends and family, a supportive church and the love and adoration of a man I've been married to for nearly 31 years. What more could I ask for....

God wants us to live our lives abundantly and to have joy in this life. That joy can be found by living the life that He outlines for us and trusting that He will take care of our hearts, if only we let Him. He's not there with money (Dang it) He's not there a new man (dang it), but if we listen, there is counsel and healing of our hearts.

I believe mine has started to heal. I have so many of you to thank for that. Continuing to stand by me and laugh and cry with me - harder times are coming for sure, but know that John and I are well cared for.

It's a time to let go kind of day....

It's been a long time since I've posted. Life seemed to go on the same for a long time. I was even taking two days off in a row from time to time.

But John is sliding into his hell. He is becoming increasingly violent toward the staff. Not every day. So we hadn't really thought too much of it.

But lately, it's come on more frequently. And sometimes in a way that makes me laugh. And that's the hard part, because my John was such a private person. I might want to laugh at what he's been up to, but that's not something John would have wished to have been made public.

I remember his first and ONLY trip to Sioux City for my uncle's 60'th birthday. Being Harbeck's, we OF COURSE started to talk about farts. Sorry - it's a Harbeck thing. John was so upset. He NEVER EVER had talked publicly about such a thing. He soon became inured to it. But the point is, he was such a private person. He was a true introvert. He processed all things internally. What I learned from this was so amazing. I always thought shy people were just shy and maybe even too timid to share their thoughts. What I learned from John was that an introvert has just as powerful of thoughts as an extravert, but is more selective as to whom those thoughts are shared. That's more powerful than an extravert like me who shares pretty much whatever I'm thinking all of the time.

So. While I won't share on the world wide web all of the details of his almost denouement, I will tell you it's not John. My John wouldn't hurt a fly, let alone me. He came close to crushing my hand today. It's ok. He wanted to bite my arm while he had my hand in a death grip. I'll check my tetanus shots and put ice on my knuckles.

And this is only today's episode.

I don't believe that God is doing this to John or to me to teach either of us a lesson. I believe God is weeping along with us and is readying a place for him. Any other God is not a God I want to believe in. Nobody is that cruel to allow this debasement to occur.

So please. If you pray, if you believe, pray that God takes John home very soon.

It's a read your fortune cookie kind of day.....

I've been struggling with how to muster enough courage to pull John off of medications that do not relate to Lewy Body. These would be the medications related to Orthostatic Hypotension. This has been the culprit responsible for more trouble earlier on in his journey into hell with Lewy Body.

Today, I finally did it. John's daughter came to be sure I didn't lose my resolve. I asked for a hospice eval and to have his medications revisited. We're moving from palliative to hospice.

I have always felt doctors were wrong to prolong life when there was no quality of life and no hope. Now the shoe's on the other foot and I must make a decision.

John has been quite clear in wanting to die. He started saying this a lot since last summer. I believe him to be quite lucid when he says it. He said it again last night.

Two nights ago was a very tough night. According to my lawyer, if I were to put John on medicaid, I would have to cash in $86K of my retirement funds - which means all of it when you include penalties and taxes. I decided not to do that. I would bring him home before I allowed that to happen. John would not approve.

But yesterday morning, my "Message from God" (FB app) said this:

"On this day of your life, Susan, we believe God wants you to know...that today is a big day for you.

Yes, today. Keep your eyes open for a message. It might come in a shape of a bird flying overhead, or a graffiti on a wall, or a phrase said by a passerby, or... Whatever shape it has, this message has been trying to reach you for years, and today is finally the day. Keep your senses open. "

How do these apps know? Obviously, they're like fortune cookies or horoscopes. You can read whatever you want to in them. But, I think John was the messenger. He was giving me one final ok....

God is watching over the two of us. Make no mistake. When things seem to be falling apart, I feel His strength in ways you cannot mistake. I'm not somebody who reads the Bible over and over again. I don't quote verses from the Bible. But I do know that God is giving me the strength and courage I need. He sends it in so many forms and it is like a security blanket laying over me.

A day in the life: Life in the nursing home also involves death...

A day in the life: Life in the nursing home also involves death...: "I'm three for three today. My colonscopy was perfect, I was released from PT and Tom C was released from his illness today. One of the thin..."

Life in the nursing home also involves death...

I'm three for three today. My colonscopy was perfect, I was released from PT and Tom C was released from his illness today.

One of the things that has caught me by surprise by nursing homes is how attached I get to the other residents. When John was placed at his first nursing home, he was only there for two weeks and yet I cried all day when we left.

We've now been at Jones since the middle of August. I know these residents like they are family and I know their families like they are family. I have supper with them every night. We all greet each other like it was the set of Cheers..."NORM!!!!" Where everybody knows your name...and we're always glad you came.

Well, we all know why we're here. And if we'd think about it, we'd know our loved ones are only going out one way. But we DON'T think about it. We have life and we celebrate it each night. We laugh a lot - surprisingly. The residents themselves are a source of huge amusement. For instance, tonight while dinner was being served, the movie they were watching was "50 FIrst Dates". At one point, Adam Sandler is telling the walrus goodbye, he said "and don't forget to wear a condom, or a garbage bag in your case". Well, Mary Lou laughed quite loudly and I started to laugh. But then she said "I don't know what a garbage bag is"....Obviously she KNEW what a condom was..At the same time, Lorraine is saying that her hand is no longer working, as she continues to use it. This often happens to Lorraine. Sometimes her fingers disappear, too. One night she was explaining this to Mary Lou and asked Mary Lou if she had all 10 of her fingers and Mary Lou says "I don't know, I never checked"...I'm telling you, if Nora Ephram spent time in our dining room, she'd have another best selling movie.

So, when Kay passed away a few weeks ago, I was sad, but I'd known it was coming. Kay used to hold John's hand and walk the halls with him. Tom A. had told me one night I could take my wedding band off now. She always gave you a blessing when she talked to you. "God loves you. You are a good person." Then she switched to Greek and the rest was lost. But we knew it was coming after she fractured her hip.

A week later, Mary died peacefully in her sleep. Without warning. Her daughter was a regular at the dinner table. So, we lose two when one dies.

But this morning, Tom C died. He'd been slipping quickly these past few weeks. His wife, Sophie, had become such a good friend, confidant, blessing, laugh producer, blessing giver, meal provider, hug and kiss provider. She and I had so much in common. Besides both of our husbands having dementia, we both love to cook. Except that she's a real cook; I'm just a pretend one. She's also a real seamstress. So, we would get the residents at our table going and we'd be the receivers of the best gift of all - love and laughter.

Sophie is the one who brought me to hear Anne Bancroft. Her children and their spouses treat me like family. I love them all so much.

God sent me Sophie to ease me into this life. She will tell you the same about me, but don't you believe it. She's my gift. My tears are as much for the loss of her at the dinner table as my sadness in Tom's passing.

My "Message from God" this morning (A facebook ap) said "All is well, All is well, All is well". Like I said, I was three for three.

On finding Courage

Many people have said to me that I am so brave to have a husband in the nursing home. My response to that is generally "WTF?" What are my options? To not move forward anymore?

I just listened to Anne Bancroft, the explorer who traversed both the North and South Pole. She doesn't feel like she was courageous for having done so.

She said the every day things often take much more courage. She got a card from a 5th grader once that
said "I understand how scary a new day can be, I just changed schools."

Anne also talked about how women, in particular, defer their courage. We
often are told we are so courageous and we say "No, no...not me". But Courage
is relative to where you are.

Courage is going forward into a place where you can not see the destination,
putting one foot in front of the other while pulling a 1400 pound sled. Isn't
that what we do daily with our loved ones? We don't know what the day will be
like when we rise in the morning. We've lost our own futures - if that isn't a
1400 pound sled we're pulling, I don't know what is. And yet, we do it. One
step at a time, one foot in front of the other. We whine a little bit (or a
lot) along the way. We seek companionship from others who know our plight. But
we get out of bed, and sometimes, that is the biggest act of courage for a
caregiver.

And having others to help you pull that sled? That's God's gift.

Now that I'm a Nursing Home Spouse

Tonight I read back over all of these posts. It seems like years ago since I wrote them, and yet only about 4 months ago.

My life is different now, John's life is more different. He lives in a nursing home a mile away. He spends his life existing. I spend my days teaching and then going to the home with Miss Xena the Warrior Princess.

John asks to go home regularly. He is often packed when I get there. He sometimes cries. It is a wonderful place, but it is not home. So many times a week we have this conversation about his not being safe at home. Re-reading these posts remind me of what life was like.

My John has left the building. Only occasionally does a glimpse of him break through. Oh, he knows people. He also sees people who aren't there. If I say I saw so and so today, he'll say, "Oh he was here this morning, he looks like hell!"

I miss him so much. I've had some rude awakenings about things he used to do - like our finances, or lack thereof. We've sold the cabin. I've learned things about our medicaid system I wished I didn't know.

But there have been some unexpected bonuses. They are named Archie and Tom and Tom and Marjorie and Lorraine. And then there's Dorothy and Albert. All residents - each one providing more fun then I'm entitled to. And then there's Sophie - one of the Tom's wife. She has become a guardian angel to me, heaven sent to keep me strong.

And so, after 30 years of marriage, I am alone. Both of my boys have left the nest. It's me and the Xena monster.

I struggle a lot lately to find what the hell we're doing on this earth. Why are we here? Is it to wind up like John? Then merely EXIST for the rest of our days? I do know that God keeps sticking people in my path to guide me and comfort me and remind me that I am not alone. And He finds new uses for me, both in the nursing home and school. But I think of how wonderful it is to sit with Dorothy and hold her hand for awhile. Or how sweet it is that Tom A precisely organizes food from his plate onto a spoon to feed Miss Xena. This from a man who loudly proclaimed NO DOGS IN THE DINING ROOM!! IT'S A RULE! the first night we were there. He now calls Xena his little buddy. Even Dorothy talks about Xena even though she doesn't talk much at all.

So is this it? God putting all of these people in my path to give me a sense of purpose if I've opened my eyes to it. Or to remind me that others have it much worse? Or to ease the path for staying there with John...

No answers again, only questions.

It's a "Let's keep the future in the future" kind of day.

I am reminded over and over again to live in the present. I got this today from Dr. David Jeremiah:

Every person has both kinds of memories. But we live in the present, not the past. Ask God for grace to find His lessons in every event and every memory, to let go of the past, rejoice in the present, and reach for the future--"the prize of the upward call of God in Christ Jesus" (Philippians 3:13-14).

Meditation is the best help to memory.

Matthew Henry

One thing that is happening is I am changing my mind about every other hour about John's future. He's improved so much, I actually allow myself to hope that I could bring him home. But you know what? I cannot predict the future. That's above my pay grade. I have a plan. A man and a plan. And right now the plan is to live right now. Let the future take care of itself.

That's so much easier said than done, though, isn't it? Why is that? I would say mostly because of money. If we were people of any means, I wouldn't be spinning all of these scenarios. I'd know that tomorrow would be cared for.

I am also trying desperately to hold on to our family cabin so that it continues to be a source of rejuvenation for the Marsh Family, knowing that the sale of the cabin would provide funds which would allow me to live in the present a little better.

So - the plan is to try and let go of the worry. That's not easy for me. I'm a natural planner for the future. And now at the moment of life and death, I simply cannot shed that side of me anymore than I can shed my DNA.

Let go and let God. OMMMMMMMM.

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.