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.....

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 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.

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.

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.