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....

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 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?

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.