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.
Showing posts with label Lewy Body Disease. Show all posts
Showing posts with label Lewy Body Disease. Show all posts
Friday, January 27, 2012
Thursday, July 21, 2011
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....
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....
Sunday, December 5, 2010
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.
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.
Thursday, October 28, 2010
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.
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.
Friday, August 6, 2010
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:
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.
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.
Friday, July 30, 2010
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.
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.
Thursday, July 29, 2010
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.
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.
Wednesday, July 28, 2010
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?
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?
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