At one time Marty was a fairly prolific writer. With her humor and insight she would have been a wonderful blogger, I guess in effect she is because she inspires so much of this blog. Marty wrote this right after her Mother had a cerebral shunt and a cerebral hematoma. I want to think this happened in 2000 or 2001. It's amazing how close to the bone she cuts this.
This may ramble, but I need to write it now. I am just back from mom having brain surgery twice in one week, lots of very stressful and very frightening stuff. Briefly, Mom is better, out of ICU in the Neuro observation unit, and will probably go to rehab soon. Still quite a bit of confusion and poor coordination of muscles - particularly right side (bled on left side). Language and purposeful movements are most compromised, but all signs are slowly improving and it has not reached a plateau yet.
I am somewhat encouraged; 2 days ago there was only a blank stare. In a detached sort of way, it has been a fascinating process to be a part of. I have learned more in the last 10 days than you can imagine about neurosurgery, suffering, compassion, me, and life in general. It has been an amazing experience, I can't say I'm glad at all that it happened, but I would not trade for having been a part of it. I am changed in very fundamental ways -- although that sounds rather dramatic and a tad histrionic.
My father has been incredible, two phrases he used repeatedly when I would get discouraged, "I'll play whatever hand I'm dealt" and "I'm designed for whatever the job requires." Although I have never admired their relationship except for the longevity of it (51 years) it was awesome to watch their love play out and impact all of this. His commitment to my Mother and the whole "for better or worse” was operating at full force and often took my breath away.
The big thing for me involved this notion of "the grace of obligation." More and more I think I understand that through meeting obligations that just come with loving others, you receive God's grace. Through all of this I had two voices going on (borrowing from Kay Toombs) - the human voice that fights against it all and screams "no, don't let this happen, this sucks, this is my worst nightmare, this is so bad, I can't bear it." Vs the spiritual voice that says "no matter what, it will be okay, God didn't make this happen, but is with all of us each moment, and will help us bear whatever occurs." This love is made evident through the multitude of caring, compassionate gestures from people you know and from people you don't know. I have been in similar situations before and I don't think you ever experience God's love as powerfully as when you are in some kind of real crisis - it strips you of all the things that normally block the receiving of God's love. In this way the crisis becomes an amazing opportunity to receive grace.
In addition, to be able to offer comfort to someone who is sick and suffering or someone who is mentally hurting and frightened allows you to be a vessel or vehicle for grace. It becomes a privilege to minister to someone who is suffering, and you know what? - I'm good at that. The verse "if you have done it to one of these, you have done it to me." Well this is what the grace of daily obligation means. It really does become an honor to respond to the needs and expectations and hurting in others. The obligation gets transformed into an opportunity that nets you unbelievable grace. To be forced to walk by faith, not sight is really wonderful in a very paradoxical way. I don't mean faith that the problems of this world will all be okay. Maybe they won't, but faith that you really are "designed for whatever the job requires" and that ultimately - everything will transcend this and be okay.
Monday, March 29, 2010
Saturday, March 27, 2010
That Little Therapeutic Piano
Marty has been a musician for as long as I have known her. At one time or another she developed a reasonable level of proficiency playing the baritone, the French horn, the guitar, banjo and piano. She loved playing the piano, took lessons in her youth and became quite accomplished. She also enjoyed singing. Over the years she sang with several choirs and she particularly relished singing alto with her small group chorus, The Common Souls, from our church.
One of our first major furniture purchases was a piano, a dark cherry Wurlitzer up-right that still has a place of honor in our living room. I remember Marty’s Father helping us with the down payment and negotiating with the salesman. He got him to throw in the sales tax. Marty played the piano for hours on end and I would often sit with her and sing while she played. I can't really carry a tune in a bucket but I can sing loud. Loud can be good, right?
After Marty’s first stroke she didn’t play much, she found it very hard to concentrate on the music and her right hand was still weak from the left sided stroke. After she had the 2nd stroke, music seemed like something that would be lost forever.
There are places where you go after a stroke, after the hospital, called sub acute care units. These are kind of half way houses after you no longer need a hospital but still need skilled nursing and therapy. We went to St. Catherine’s. Physical, occupational and speech therapy become the daily regimen for any recovering stroke patient. It’s an incredibly important part of a very long recovery process.
Marty would go to therapy three times a day. She was weak, confused and had very little stamina, but she went and she tried and we learned. It was incredibly hard to watch as she struggled with the simplest things, as she often struggled just to keep her head up and stay awake and aware.
Therapists are a wonderful lot and they see and work with people that are completely broken and trying to heal. Theirs is a very difficult job trying to get people to move beyond their current circumstances and make daily progress. Sometimes, I think, I saw, after about two weeks and no significant progress everyone gets a bit discouraged and everyone is a bit inclined to lose a certain amount of hope. We got there; I saw that, I know the therapists got there.
Then one Saturday afternoon we found some hope. Our daughter Erin and our son Matt were so faithful and good to come see their Mom virtually every weekend and we needed help on the weekends. The days without therapy were incredibly long and both Marty and I needed the diversion.
That Saturday afternoon Erin took her Mom out of her room and to the central lounge. In the lounge were the requisite couches, overstuffed chairs, a large aquarium, a couple of tables and most importantly a very old upright piano someone had donated. Erin pushed her Mom in her wheelchair and sat her in front of the piano and opened up an old, generic hymnbook.
Marty’s left hand, left leg and parts of her left brain had been essentially rendered useless by this most recent stroke. But, somewhere in the recesses of that broken brain she recognized the notes on the page of the old hymnal, raised her good right arm, put her good right foot on the pedal and slowly, haltingly started to play. It was slow, broken with missed sharps and flats at first, but slowly, surely the music began to smooth out and the right notes and chords started to kind of lift out of that old piano.
I watched Marty and Erin sitting at that piano and started to let myself feel just a little bit of hope as Erin turned the page and Marty began another hymn. A couple of the nurses saw Marty playing and came over to see if it was really her playing and not her daughter. Each one touched her back and mouthed the words, “Amazing”, as Marty continued to process the notes from the page to the keys on the piano, as Marty started her own process of healing.
It was one of those moments I keep in my heart and my mind. When the therapists heard our story of the piano, we all attacked therapy with a renewed sense of effort and hope.
One of our first major furniture purchases was a piano, a dark cherry Wurlitzer up-right that still has a place of honor in our living room. I remember Marty’s Father helping us with the down payment and negotiating with the salesman. He got him to throw in the sales tax. Marty played the piano for hours on end and I would often sit with her and sing while she played. I can't really carry a tune in a bucket but I can sing loud. Loud can be good, right?
After Marty’s first stroke she didn’t play much, she found it very hard to concentrate on the music and her right hand was still weak from the left sided stroke. After she had the 2nd stroke, music seemed like something that would be lost forever.
There are places where you go after a stroke, after the hospital, called sub acute care units. These are kind of half way houses after you no longer need a hospital but still need skilled nursing and therapy. We went to St. Catherine’s. Physical, occupational and speech therapy become the daily regimen for any recovering stroke patient. It’s an incredibly important part of a very long recovery process.
Marty would go to therapy three times a day. She was weak, confused and had very little stamina, but she went and she tried and we learned. It was incredibly hard to watch as she struggled with the simplest things, as she often struggled just to keep her head up and stay awake and aware.
Therapists are a wonderful lot and they see and work with people that are completely broken and trying to heal. Theirs is a very difficult job trying to get people to move beyond their current circumstances and make daily progress. Sometimes, I think, I saw, after about two weeks and no significant progress everyone gets a bit discouraged and everyone is a bit inclined to lose a certain amount of hope. We got there; I saw that, I know the therapists got there.
Then one Saturday afternoon we found some hope. Our daughter Erin and our son Matt were so faithful and good to come see their Mom virtually every weekend and we needed help on the weekends. The days without therapy were incredibly long and both Marty and I needed the diversion.
That Saturday afternoon Erin took her Mom out of her room and to the central lounge. In the lounge were the requisite couches, overstuffed chairs, a large aquarium, a couple of tables and most importantly a very old upright piano someone had donated. Erin pushed her Mom in her wheelchair and sat her in front of the piano and opened up an old, generic hymnbook.
Marty’s left hand, left leg and parts of her left brain had been essentially rendered useless by this most recent stroke. But, somewhere in the recesses of that broken brain she recognized the notes on the page of the old hymnal, raised her good right arm, put her good right foot on the pedal and slowly, haltingly started to play. It was slow, broken with missed sharps and flats at first, but slowly, surely the music began to smooth out and the right notes and chords started to kind of lift out of that old piano.
I watched Marty and Erin sitting at that piano and started to let myself feel just a little bit of hope as Erin turned the page and Marty began another hymn. A couple of the nurses saw Marty playing and came over to see if it was really her playing and not her daughter. Each one touched her back and mouthed the words, “Amazing”, as Marty continued to process the notes from the page to the keys on the piano, as Marty started her own process of healing.
It was one of those moments I keep in my heart and my mind. When the therapists heard our story of the piano, we all attacked therapy with a renewed sense of effort and hope.
Monday, March 22, 2010
She Laughed Me Back to Normal
She did it again. She did it, as usual in her new, understated manner, quietly, with very few words. She looks, she speaks, and she touches my heart. She makes me feel, and sometimes feeling so strongly is scary. Sometimes the feelings are so intense and sudden it makes me feel less than a man. Then, she laughs at me when I say she touched my heart.
I had errands to run, peppers to buy, letters to mail and bills to deliver. I wanted Geraniums, I wanted potting soil, I wanted to plant some color. Marty was with me as I ran down the list of things I needed to do. We had been playing. We had been at the computer playing Strike a Match, a computer game Marty always enjoyed playing with me. She says she likes playing and still contributes when she sees an answer before I do.
I turned to Marty and told her I needed to go run the errands and if she wanted, she could go back to her room with Renae her caregiver and lay down for her afternoon rest.
She said, "Why?"
I said,”So you can rest".
"I'm not tired", she says.
Then she touches me with the simplest words, "I want to go with you."
Her simple statement jolted me with memories from before Marty had her strokes; a previous normalcy gone more than five years. It reminded me of very simple times when we would just go to the car and take care of mundane normal business. Just that simple statement reminded me that even today, she wants to be with me, to go with me, to do with me, emphasis on the "with me". What can I say it touched my heart, I was reminded once again of the simple things that make us married.
I looked at Marty and said, "You touched my heart, I'm touched that you would want to go with me."
She looked up, paused, and then laughed, sounding kind of like Beavis of Beavis and Butthead. She laughed not to denigrate or minimize my moment but it's how she expresses emotions now.
Her laughter brought my heart back to normal, the tender moment there but past. What better way to move through some of the pain of remembering and some of those loving, simple moments. I just wish I could get over feeling like such a wimp.
I had errands to run, peppers to buy, letters to mail and bills to deliver. I wanted Geraniums, I wanted potting soil, I wanted to plant some color. Marty was with me as I ran down the list of things I needed to do. We had been playing. We had been at the computer playing Strike a Match, a computer game Marty always enjoyed playing with me. She says she likes playing and still contributes when she sees an answer before I do.
I turned to Marty and told her I needed to go run the errands and if she wanted, she could go back to her room with Renae her caregiver and lay down for her afternoon rest.
She said, "Why?"
I said,”So you can rest".
"I'm not tired", she says.
Then she touches me with the simplest words, "I want to go with you."
Her simple statement jolted me with memories from before Marty had her strokes; a previous normalcy gone more than five years. It reminded me of very simple times when we would just go to the car and take care of mundane normal business. Just that simple statement reminded me that even today, she wants to be with me, to go with me, to do with me, emphasis on the "with me". What can I say it touched my heart, I was reminded once again of the simple things that make us married.
I looked at Marty and said, "You touched my heart, I'm touched that you would want to go with me."
She looked up, paused, and then laughed, sounding kind of like Beavis of Beavis and Butthead. She laughed not to denigrate or minimize my moment but it's how she expresses emotions now.
Her laughter brought my heart back to normal, the tender moment there but past. What better way to move through some of the pain of remembering and some of those loving, simple moments. I just wish I could get over feeling like such a wimp.
Saturday, March 20, 2010
It's What Most of Us Voted For
It's finally coming to a vote. As I write this post I don't know whether the health care reform bill will pass, it's very close, but we are finally going to see an up or down vote and an end to this legislative cluster.
I have seen, used and purchased health insurance of all types over the last five years. I have been rocked in the cradle of corporate insurance and been forced to buy from the one insurance provider that would underwrite me. I have seen medical providers at their worst and at their best, up close and personal. Since Marty's illness I have seen our health care system up close and too personally and I know it has to change. Our elected President and our Congress have finally and incrementally moved to the precipice of making a decision to help the people.
For those who are screaming about Senate reconciliation votes and Congressional deem and pass votes it’s important to keep in mind; all of those folks who are voting yea or nay have been duly elected by their constituents. For those who are up in arms about our Presidents single-minded pursuit of sea change in our health care please keep in mind this is exactly what he campaigned on and the majority of the USA voted for him and it is exactly what he said he planned to achieve.
Republicans held complete power for six years. They were essentially thrown out of office in 2006 because the failed in their bargain with the American people. In 2008 virtually everything Republicans stood for was repudiated by the voters in the United States. This was not a coup, the American people mandated a change and ultimately, if the American people do not like the change, they can vote out the Democrats, that is how our system works. Every one of the Congressman or women who will vote on the reconciliation bill and HCR were voted into office and are accountable to the people in their districts.
I suspect all of the yeas were voted into office knowing and hoping they would vote for health care reform. When they vote yea or nay on the bills they will be doing what they told their constituents they would do, voting for or against health care reform. My Congressman, Chet Edwards is voting no, I don't like that vote at all but, I'm not surprised by his vote, he feels it's what his constituents want.
The Senate will then need to take up the reconciliation bill, a bill that is basically taking out some trash from the original bill. They will get an up and down vote, it will not pass without a majority of our Senators voting for the bill, just as it should be. A super majority has already voted to approve this bill. Just like the House, these people were all elected by we the people. Again, I doubt seriously if any of the yea votes will be a surprise to their constituents; if it is, and a majority doesn’t like the vote, they will be voted out when they run for office. That's the way it works and to quote our President, "That's what elections are for."
It amazes and dismays me to hear all of these people, all of these good, well-intentioned people talking about treason, impeachment, civil war, or revolution because duly elected representatives are doing the work of their districts. I am just flummoxed that ordinary, law-abiding citizens would scream and shout and throw racist slurs at Congressmen who are voting for their constituency. These are the people we elected doing exactly what they said they would do; again, this is what elections are for.
I love a spirited debate; I think it is an integral part of our country. I like that people are passionate about their policy positions and are involved. I despise the hatred, the hyperbole, the lies and the fact you just can't believe anyone. Somehow, we have to get to the point, we have to understand, elections matter and the people who were elected by us, the American people, are doing what we asked them to do. When we voted last November, we voted for health care
I have seen, used and purchased health insurance of all types over the last five years. I have been rocked in the cradle of corporate insurance and been forced to buy from the one insurance provider that would underwrite me. I have seen medical providers at their worst and at their best, up close and personal. Since Marty's illness I have seen our health care system up close and too personally and I know it has to change. Our elected President and our Congress have finally and incrementally moved to the precipice of making a decision to help the people.
For those who are screaming about Senate reconciliation votes and Congressional deem and pass votes it’s important to keep in mind; all of those folks who are voting yea or nay have been duly elected by their constituents. For those who are up in arms about our Presidents single-minded pursuit of sea change in our health care please keep in mind this is exactly what he campaigned on and the majority of the USA voted for him and it is exactly what he said he planned to achieve.
Republicans held complete power for six years. They were essentially thrown out of office in 2006 because the failed in their bargain with the American people. In 2008 virtually everything Republicans stood for was repudiated by the voters in the United States. This was not a coup, the American people mandated a change and ultimately, if the American people do not like the change, they can vote out the Democrats, that is how our system works. Every one of the Congressman or women who will vote on the reconciliation bill and HCR were voted into office and are accountable to the people in their districts.
I suspect all of the yeas were voted into office knowing and hoping they would vote for health care reform. When they vote yea or nay on the bills they will be doing what they told their constituents they would do, voting for or against health care reform. My Congressman, Chet Edwards is voting no, I don't like that vote at all but, I'm not surprised by his vote, he feels it's what his constituents want.
The Senate will then need to take up the reconciliation bill, a bill that is basically taking out some trash from the original bill. They will get an up and down vote, it will not pass without a majority of our Senators voting for the bill, just as it should be. A super majority has already voted to approve this bill. Just like the House, these people were all elected by we the people. Again, I doubt seriously if any of the yea votes will be a surprise to their constituents; if it is, and a majority doesn’t like the vote, they will be voted out when they run for office. That's the way it works and to quote our President, "That's what elections are for."
It amazes and dismays me to hear all of these people, all of these good, well-intentioned people talking about treason, impeachment, civil war, or revolution because duly elected representatives are doing the work of their districts. I am just flummoxed that ordinary, law-abiding citizens would scream and shout and throw racist slurs at Congressmen who are voting for their constituency. These are the people we elected doing exactly what they said they would do; again, this is what elections are for.
I love a spirited debate; I think it is an integral part of our country. I like that people are passionate about their policy positions and are involved. I despise the hatred, the hyperbole, the lies and the fact you just can't believe anyone. Somehow, we have to get to the point, we have to understand, elections matter and the people who were elected by us, the American people, are doing what we asked them to do. When we voted last November, we voted for health care
Wednesday, March 17, 2010
Of Underwear and Hugs
I don't know if I had to buy a pair of underwear for the first 50 years of my life. I’m not really sure what that says about me. For the first 18 years of my life my Mother bought me tightie-whities. For the next three years I just wore those until they were ragged. Then I married Marty and she replaced those ragged drawers with something more up-to-date, at least for the 70's. Marty kept me in underwear for the next 30 years except for the one time my daughter-in-law had to step in when we were caught out of town, then colored drawers were introduced, it was a new beginning.
Since Marty got sick I have had to buy my own drawers and do a lot of things for myself and by myself. In some ways the experience has spurred emotional and psychological growth, in others not so much, it’s just been painful having to do so many things on my own. The singular thing I keep finding; I get really lonesome. I miss my partner, I miss that person in my life who I would count on to make sure I had new underwear. I know, I'm a grown man, I can buy my drawers, I have purchased several pair, that's not the point.
Marty used to rag on me all the time about owning my feelings, understanding them, talking about them. Ugh, feelings and talking about feelings, makes me shake. I still struggle just to identify how I feel, much less own them and understand them. Marty on the other hand always knew how she felt and was who I looked to for help in clarifying my own thoughts and feelings,
And then there's the whole notion of fixing the bad stuff, fixing those bad, sad, grouch feelings. I can’t count the times I heard Marty say, "I feel.....” If this was bad feeling, I would immediately try and figure out how I made her feel that way and how I could fix it. I was told countless times, "don't try and fix it, just understand it".
I got that now, that's what I'm trying to do, owning my feelings, recognizing my issues and not expecting anyone or anything to do anything. This can't be fixed right now, I know that, I’m not asking anyone to do anything different, but I get lonesome. I miss my partner, I miss that person sitting next to me, I miss that person sleeping next to me, I miss having someone to bitch at and bitch to and bitch at me, I miss the dynamics of a full contact blown-up, blown-out relationship. I’m a touchy feely guy, I miss human touch, and I miss hugs.
I suspect I am like other spouses who evolve into full time caregivers for their chronically and catastrophically ill spouse. You are still married, still devoted, still in love, but some of the basic parts of being nurtured are missing, emotional and physical contact. I love my wife passionately and have always said caring for her is the most decent thing I have ever done. But, I miss the close intimate contact that comes with a partner, someone who has shared the trials, tribulations and joys of life.
I saw my father-in-law go through much of the same thing with my chronically ill mother-in-law. I watched him, and while he was often surrounded by friends and family who loved him, he missed his wife, he missed that person in his life who made him part of a whole unit. It’s one of the more difficult aspects of providing care for spouses; you just simply miss that part of full living.
I’m not asking for anyone to swoop down into our home and touch me. Matt, Sarah, Erin, Lyle you all do exactly what you are doing. You can’t fix this, no one can, it just is.
Just know a couple of things; my underwear is in good shape, our care givers throw them away when they get holes in them (while doing laundry) and if I perhaps hold you a little too long or a little too tight when we hug, just let it be and understand.
Since Marty got sick I have had to buy my own drawers and do a lot of things for myself and by myself. In some ways the experience has spurred emotional and psychological growth, in others not so much, it’s just been painful having to do so many things on my own. The singular thing I keep finding; I get really lonesome. I miss my partner, I miss that person in my life who I would count on to make sure I had new underwear. I know, I'm a grown man, I can buy my drawers, I have purchased several pair, that's not the point.
Marty used to rag on me all the time about owning my feelings, understanding them, talking about them. Ugh, feelings and talking about feelings, makes me shake. I still struggle just to identify how I feel, much less own them and understand them. Marty on the other hand always knew how she felt and was who I looked to for help in clarifying my own thoughts and feelings,
And then there's the whole notion of fixing the bad stuff, fixing those bad, sad, grouch feelings. I can’t count the times I heard Marty say, "I feel.....” If this was bad feeling, I would immediately try and figure out how I made her feel that way and how I could fix it. I was told countless times, "don't try and fix it, just understand it".
I got that now, that's what I'm trying to do, owning my feelings, recognizing my issues and not expecting anyone or anything to do anything. This can't be fixed right now, I know that, I’m not asking anyone to do anything different, but I get lonesome. I miss my partner, I miss that person sitting next to me, I miss that person sleeping next to me, I miss having someone to bitch at and bitch to and bitch at me, I miss the dynamics of a full contact blown-up, blown-out relationship. I’m a touchy feely guy, I miss human touch, and I miss hugs.
I suspect I am like other spouses who evolve into full time caregivers for their chronically and catastrophically ill spouse. You are still married, still devoted, still in love, but some of the basic parts of being nurtured are missing, emotional and physical contact. I love my wife passionately and have always said caring for her is the most decent thing I have ever done. But, I miss the close intimate contact that comes with a partner, someone who has shared the trials, tribulations and joys of life.
I saw my father-in-law go through much of the same thing with my chronically ill mother-in-law. I watched him, and while he was often surrounded by friends and family who loved him, he missed his wife, he missed that person in his life who made him part of a whole unit. It’s one of the more difficult aspects of providing care for spouses; you just simply miss that part of full living.
I’m not asking for anyone to swoop down into our home and touch me. Matt, Sarah, Erin, Lyle you all do exactly what you are doing. You can’t fix this, no one can, it just is.
Just know a couple of things; my underwear is in good shape, our care givers throw them away when they get holes in them (while doing laundry) and if I perhaps hold you a little too long or a little too tight when we hug, just let it be and understand.
Saturday, March 13, 2010
Broken and Confused
The Sunday seizure which led to the Monday broken arm diagnosis amounted to a bad 24 hours. It was worse than a bad day, it felt catastrophic, and it felt like doom. It was, in a word, depressing. We had worked so hard and had made so much progress against so much adversity; and it felt like we were thrown back three years. In some ways it was like God dropped another mountain in our way forward and while I'm a big fan of Job I have neither his patience nor his faith.
It took me a couple of days to kind of get my bearings and to start figuring out the best way for us to handle the new mountain. I just knew surgery was not a good option for us and once the orthopedic surgeon said she would gain some use of the arm, it seemed like the mountain laid before us was at least climbable.
We are dealing with the broken arm and trying to deal with the side effects of the anti-seizure medication, Keppra. In a word, it sucks. The Keppra makes things confusing for Marty, it slows down an already slow brain, it makes her sleepy, it makes her feel really tired. We did this once already, three years ago and made a very deliberate decision to eschew anti-convulsants; they simply made an already hard life more difficult and less enjoyable for Marty. Now, somehow, we find ourselves back to the same spot of three years ago only with a broken wing.
Marty and I spent part of the afternoon looking at various anti-seizure meds and looking at the possible side effects from all of them. Virtually all of them talk about sleepiness, confusion, loss of coordination, exhaustion. Some mention other wonderful things like nausea, vomiting, constipation, hair loss or kidney stones. When is the cure worse than the disease? I don't know, this is once again one of those decisions we have to make where there aren't any good answers.
If you have ever seen a seizure it is very simply horrifying. I can't imagine what it must be like for the person having the seizure, I know it must be completely disorienting and very frightening. The first time I saw Marty seize I thought she was dying, she convulsed, she drew up, sucked for air, turned blue and shook violently. I felt real panic creep up my back and neck before I called 911. The 2nd time it happened I knew better what to do and I got my face close to Marty's and told her I was there and it was going to be okay. I'm not sure how convincing one can be in those situations. I just wanted her to know someone who loved her was with her.
I really, really don't want her to go through that again, but I don't think she feels even close to her normal. I don’t know if any of us can take any more steps backward right now. The whole thing feels like such a loss, it feels like going back too far, it feels like false choices again.
We will talk to Marty's doctors, Marty and I will talk, we will talk with our kids and figure out our next steps and what is our best course of action. I am committed to giving Marty's body adequate time to adjust to the Keppra but I am just as committed to doing everything I can to make sure Marty has every chance to have as much quality in her life as possible. We shall see.
It took me a couple of days to kind of get my bearings and to start figuring out the best way for us to handle the new mountain. I just knew surgery was not a good option for us and once the orthopedic surgeon said she would gain some use of the arm, it seemed like the mountain laid before us was at least climbable.
We are dealing with the broken arm and trying to deal with the side effects of the anti-seizure medication, Keppra. In a word, it sucks. The Keppra makes things confusing for Marty, it slows down an already slow brain, it makes her sleepy, it makes her feel really tired. We did this once already, three years ago and made a very deliberate decision to eschew anti-convulsants; they simply made an already hard life more difficult and less enjoyable for Marty. Now, somehow, we find ourselves back to the same spot of three years ago only with a broken wing.
Marty and I spent part of the afternoon looking at various anti-seizure meds and looking at the possible side effects from all of them. Virtually all of them talk about sleepiness, confusion, loss of coordination, exhaustion. Some mention other wonderful things like nausea, vomiting, constipation, hair loss or kidney stones. When is the cure worse than the disease? I don't know, this is once again one of those decisions we have to make where there aren't any good answers.
If you have ever seen a seizure it is very simply horrifying. I can't imagine what it must be like for the person having the seizure, I know it must be completely disorienting and very frightening. The first time I saw Marty seize I thought she was dying, she convulsed, she drew up, sucked for air, turned blue and shook violently. I felt real panic creep up my back and neck before I called 911. The 2nd time it happened I knew better what to do and I got my face close to Marty's and told her I was there and it was going to be okay. I'm not sure how convincing one can be in those situations. I just wanted her to know someone who loved her was with her.
I really, really don't want her to go through that again, but I don't think she feels even close to her normal. I don’t know if any of us can take any more steps backward right now. The whole thing feels like such a loss, it feels like going back too far, it feels like false choices again.
We will talk to Marty's doctors, Marty and I will talk, we will talk with our kids and figure out our next steps and what is our best course of action. I am committed to giving Marty's body adequate time to adjust to the Keppra but I am just as committed to doing everything I can to make sure Marty has every chance to have as much quality in her life as possible. We shall see.
Wednesday, March 10, 2010
The First One -- Summer of Recovery
The summer of 2005 was different. I wasn't employed but I was working, I was full of anxiety and working extremely hard, working for Marty. When we came home in June I was terrified. I didn't know what I needed to do or how to do it. Daughter Erin helped get me organized with all of Marty's medication -- there was a lot. Friends offered varying degrees of support but I knew Marty and I had to do this ourselves.
Marty kept going to speech therapy to work on her short term memory. I would go with her and sit with her during the sessions and try not to answer the questions for her. I still don't understand why I would get so anxious if she didn't know an answer or couldn't remember the three things she was asked to remember. It was like when the kids were playing Little League baseball, I didn't want them to feel bad about striking out but By God they needed to hit the ball. I didn't want Marty to feel bad about forgetting the three things -- but it seemed such a simple thing. But, it's only simple if your brain hasn't been assaulted.
Marty's memory got better and better, the therapy really did help. She did not have any swallowing issues, hell, I didn't even know about strokes and swallowing issues until so much later.
Marty was clearly weak and her affect, her personality, which had always been pretty hot and volatile, was now very flat. She didn't seem overly sad, but she didn't get really happy anymore, it was just pretty flat. The vasospasms had burned out some of her anger and passion. Remarkably I found I missed that.
In July we finally went back to Zale-Lipshy in Dallas for the doctors to make Marty's head round again. Since April she had been missing the front left part of her forehead. In July they gave it back to her. It sounds so simple, yet we are talking about messing with another person’s skull. It's okay if we are talking about your skull - but this was my wife's skull.
The surgery went well and again we came home. I wished they had told me about some of the after effects of the anesthesia. When we got home Marty's level of confusion was amplified, her cognition simply was not very good. I was more than a little distressed, I was horrified. We had worked so hard for so long to get back to a base level and now it seemed we had taken a giant step back.
I remember sitting in the bathroom crying, I was just emotionally exhausted, I really didn't think I could do any of this any more, when Marty shuffles in and pats me on the shoulder and said, "It's going to be okay". The woman with the stitches in her head, the woman who should have died, this woman crawled out of her bed and came to comfort the man who was supposed to be giving comfort. She may have lost part of her fire but she didn't lose her love. I know I have told this story countless times, but it was a moment of epiphany for me.
As the Texas summer melted all of us Marty continued her recovery. We stayed with Speech Therapy, her memory got better and Marty slowly became more and more independent. We had Marty's 51st birthday party in August. It was a meaningful celebration; not just of her birth but her continued life. She sang with her all female chorus and enjoyed the company of friends and family and I cried. Somewhere in all of this I became a real titty baby -- I couldn't stop the water works at even the dumbest of things.
We got through the summer and the fall. Marty's independence and stubbornness about things increased. She wanted to drive herself where she needed to go, I eventually relented after going on a couple of white knuckle test drives (I don't ride with anyone well), she wanted to go to lunch with friends alone, she wanted to eat when she was ready and she wanted to control her own medicines. All of this was my Marty, all good signs of recovery.
In December we went to a Psychologist for cognitive testing. The results showed her IQ had been damaged but she could still be reasonably independent though it was also clear she would not work again. Marty's once dynamic personality was different, she was much quieter and internal; I had to carry pretty much all of the conversations. This was hard for her kids, it was hard for her friends, it just wasn't the same Marty, but she was alive, walking and caring for herself.
At Christmas we went to the panhandle of Texas to be with Marty's Mother for her 80th birthday and to celebrate Christmas. We then went to the mountains in New Mexico to snow ski.
Somewhere alarm bells should have sounded in my head. I really should have thought better than to take Marty to the mountains where the air is thin. We had to cut our trip short and come down early because it was just too much for her and she simply felt lousy. We came down, spent the night in Dalhart and then drove home to Waco. Then on January 3, 2006, on our 30th wedding anniversary our world exploded again.
Marty kept going to speech therapy to work on her short term memory. I would go with her and sit with her during the sessions and try not to answer the questions for her. I still don't understand why I would get so anxious if she didn't know an answer or couldn't remember the three things she was asked to remember. It was like when the kids were playing Little League baseball, I didn't want them to feel bad about striking out but By God they needed to hit the ball. I didn't want Marty to feel bad about forgetting the three things -- but it seemed such a simple thing. But, it's only simple if your brain hasn't been assaulted.
Marty's memory got better and better, the therapy really did help. She did not have any swallowing issues, hell, I didn't even know about strokes and swallowing issues until so much later.
Marty was clearly weak and her affect, her personality, which had always been pretty hot and volatile, was now very flat. She didn't seem overly sad, but she didn't get really happy anymore, it was just pretty flat. The vasospasms had burned out some of her anger and passion. Remarkably I found I missed that.
In July we finally went back to Zale-Lipshy in Dallas for the doctors to make Marty's head round again. Since April she had been missing the front left part of her forehead. In July they gave it back to her. It sounds so simple, yet we are talking about messing with another person’s skull. It's okay if we are talking about your skull - but this was my wife's skull.
The surgery went well and again we came home. I wished they had told me about some of the after effects of the anesthesia. When we got home Marty's level of confusion was amplified, her cognition simply was not very good. I was more than a little distressed, I was horrified. We had worked so hard for so long to get back to a base level and now it seemed we had taken a giant step back.
I remember sitting in the bathroom crying, I was just emotionally exhausted, I really didn't think I could do any of this any more, when Marty shuffles in and pats me on the shoulder and said, "It's going to be okay". The woman with the stitches in her head, the woman who should have died, this woman crawled out of her bed and came to comfort the man who was supposed to be giving comfort. She may have lost part of her fire but she didn't lose her love. I know I have told this story countless times, but it was a moment of epiphany for me.
As the Texas summer melted all of us Marty continued her recovery. We stayed with Speech Therapy, her memory got better and Marty slowly became more and more independent. We had Marty's 51st birthday party in August. It was a meaningful celebration; not just of her birth but her continued life. She sang with her all female chorus and enjoyed the company of friends and family and I cried. Somewhere in all of this I became a real titty baby -- I couldn't stop the water works at even the dumbest of things.
We got through the summer and the fall. Marty's independence and stubbornness about things increased. She wanted to drive herself where she needed to go, I eventually relented after going on a couple of white knuckle test drives (I don't ride with anyone well), she wanted to go to lunch with friends alone, she wanted to eat when she was ready and she wanted to control her own medicines. All of this was my Marty, all good signs of recovery.
In December we went to a Psychologist for cognitive testing. The results showed her IQ had been damaged but she could still be reasonably independent though it was also clear she would not work again. Marty's once dynamic personality was different, she was much quieter and internal; I had to carry pretty much all of the conversations. This was hard for her kids, it was hard for her friends, it just wasn't the same Marty, but she was alive, walking and caring for herself.
At Christmas we went to the panhandle of Texas to be with Marty's Mother for her 80th birthday and to celebrate Christmas. We then went to the mountains in New Mexico to snow ski.
Somewhere alarm bells should have sounded in my head. I really should have thought better than to take Marty to the mountains where the air is thin. We had to cut our trip short and come down early because it was just too much for her and she simply felt lousy. We came down, spent the night in Dalhart and then drove home to Waco. Then on January 3, 2006, on our 30th wedding anniversary our world exploded again.
Sunday, March 7, 2010
Worthwhile
I have been cleaning out our office in preparation for moving Marty to a larger room and adding a larger bed for her, much like we have at the LakeHouse. So far what I have done is create a pretty colossal mess. There are files and papers thrown all over the room and I pretend like I'm organizing when what I am really doing is, very simply creating a larger mess than what it was before. Organization, like patience, is not my strong suit.
In my purging of all things old and unused I have managed to throw away all of Marty's old medical bills, some of her old files and a lot of junk paperwork. While doing the purge I have found some treasures, like all of the cards Marty received after her ruptured aneurism in 2005, the first event.
Marty and I sat outside yesterday afternoon in our backyard. It was just too nice not to spend some time outdoors. Marty still doesn't feel great and the anti-seizure meds create, as she calls, "mind fog". Keppra does the intended job but the unintended consequence of the medication is there -- "mind fog".
While we sat outside I read her all, yes all, of the old cards and the notes many of you sent almost five years ago. I have to say it's still quite (Sarah, is that the right quiet?) moving to read of all of the support, love and prayers so many people sent our way. It was an awful period of time in our life that we survived. I used to take those cards up to ICU and read them to Marty, over and over again, even while she was in a coma.
I think Marty enjoyed hearing them more yesterday than she did then. I asked her how all of those cards made her feel and even with the "mind fog" she summed it up so well with just one word, "worthwhile". I think people in Marty's stage of life often feel unworthy of the care, the love, the kindness people show them because they can't do what they would normally do to reciprocate. The love she sees from her family and friends and the words of all of those people who reached out to her show all of she is worthy.
What a remarkable gift, a remarkable gift I'm just beginning to understand. This is why all of those thoughts and prayers and kind words mean so much. It makes even the least of us, the sickest among us, feel "worthwhile".
In my purging of all things old and unused I have managed to throw away all of Marty's old medical bills, some of her old files and a lot of junk paperwork. While doing the purge I have found some treasures, like all of the cards Marty received after her ruptured aneurism in 2005, the first event.
Marty and I sat outside yesterday afternoon in our backyard. It was just too nice not to spend some time outdoors. Marty still doesn't feel great and the anti-seizure meds create, as she calls, "mind fog". Keppra does the intended job but the unintended consequence of the medication is there -- "mind fog".
While we sat outside I read her all, yes all, of the old cards and the notes many of you sent almost five years ago. I have to say it's still quite (Sarah, is that the right quiet?) moving to read of all of the support, love and prayers so many people sent our way. It was an awful period of time in our life that we survived. I used to take those cards up to ICU and read them to Marty, over and over again, even while she was in a coma.
I think Marty enjoyed hearing them more yesterday than she did then. I asked her how all of those cards made her feel and even with the "mind fog" she summed it up so well with just one word, "worthwhile". I think people in Marty's stage of life often feel unworthy of the care, the love, the kindness people show them because they can't do what they would normally do to reciprocate. The love she sees from her family and friends and the words of all of those people who reached out to her show all of she is worthy.
What a remarkable gift, a remarkable gift I'm just beginning to understand. This is why all of those thoughts and prayers and kind words mean so much. It makes even the least of us, the sickest among us, feel "worthwhile".
Friday, March 5, 2010
Thursday, March 4, 2010
Coming Home -- Being Home
Coming home, walking into the house with Marty for the first time after a hospital stay always makes me want to sit down for a minute and just say, "ahhhh". Being here, pushing her into the house we have shared for 20 years, brings back a sense of control and normalcy almost immediately.
Marty always wants to take a bath before she does anything else when we come home. She wants to wash the hospital out of her hair and off her body. I don't blame her; I end up taking multiple showers daily when Marty is in the hospital.
The opposite end of the "ahh" feeling of coming home is the feeling of concern you get when you finally leave the seemingly safe and secure hospital. At the hospital you have nurses and doctors and people checking on you throughout the day. At home it's me and the girls and I have to make all of the decisions and be on hyper alert for anything that might be or go wrong for Marty. Consequently, I walk around like a German short haired pointer in the field all of the time, sniffing, looking and watching for any anomalies; I'm on point 24 hours a day.
Since our homecoming Marty is doing okay. Her arm really hurts and it looks awful; it's blue, red, green and a little yellow and swollen, it looks like she has a broken arm, oh that's right, she does. We are still trying to find the best way to move and care for Marty with the broken arm. She really did a lot for herself and I guess I never realized how much she was able to help support herself with that arm. We are learning a new way of doing some things.
I'm being easy on her (ain't I a peach) and I'm letting her stay in bed as much as she wants right now. The Keppra, the anti-seizure meds are kind of messing with her concentration and causing a moderate amount of confusion but they are not near as debilitating as I thought they might. I suspect Marty's body will become even more accustomed to the medicine over the next weeks.
Our hope remains that as the pain and swelling in her arm abates she will begin to gain more mobility and use of her right arm. We had our first appointment with her Orthopedic Surgeon today and he still feels confident she will be able to do almost all of the things she was doing prior to the break. I just want to see the pain stop, I hate hurting her; the Doctor has assured us it will stop hurting and Doctors know everything.
We are boldly moving forward one day at a time. That's about all of life we can bite off right now, and probably all any of us should try to at any one time. We are relearning some things and searching for the best ways to work around the broken arm. We will do this, we will do this just like we have done all of the other things we have had to do, we will do it together.
Marty always wants to take a bath before she does anything else when we come home. She wants to wash the hospital out of her hair and off her body. I don't blame her; I end up taking multiple showers daily when Marty is in the hospital.
The opposite end of the "ahh" feeling of coming home is the feeling of concern you get when you finally leave the seemingly safe and secure hospital. At the hospital you have nurses and doctors and people checking on you throughout the day. At home it's me and the girls and I have to make all of the decisions and be on hyper alert for anything that might be or go wrong for Marty. Consequently, I walk around like a German short haired pointer in the field all of the time, sniffing, looking and watching for any anomalies; I'm on point 24 hours a day.
Since our homecoming Marty is doing okay. Her arm really hurts and it looks awful; it's blue, red, green and a little yellow and swollen, it looks like she has a broken arm, oh that's right, she does. We are still trying to find the best way to move and care for Marty with the broken arm. She really did a lot for herself and I guess I never realized how much she was able to help support herself with that arm. We are learning a new way of doing some things.
I'm being easy on her (ain't I a peach) and I'm letting her stay in bed as much as she wants right now. The Keppra, the anti-seizure meds are kind of messing with her concentration and causing a moderate amount of confusion but they are not near as debilitating as I thought they might. I suspect Marty's body will become even more accustomed to the medicine over the next weeks.
Our hope remains that as the pain and swelling in her arm abates she will begin to gain more mobility and use of her right arm. We had our first appointment with her Orthopedic Surgeon today and he still feels confident she will be able to do almost all of the things she was doing prior to the break. I just want to see the pain stop, I hate hurting her; the Doctor has assured us it will stop hurting and Doctors know everything.
We are boldly moving forward one day at a time. That's about all of life we can bite off right now, and probably all any of us should try to at any one time. We are relearning some things and searching for the best ways to work around the broken arm. We will do this, we will do this just like we have done all of the other things we have had to do, we will do it together.
Monday, March 1, 2010
Poems and Prayers and Progress
It's looking more and more like we might actually head to the house tomorrow (Tuesday). All of the markers we use to gauge Marty's health are on the up-tick and she seems to be feeling pretty good, all things considered. Marty is talking to the nurses, interacting with visitors and asking people to scratch her back; all really good signs.
I got Marty up in her wheel chair after lunch today. She sat in her chair for about an hour and really didn't want to get back in bed. She is still pretty weak and her shoulder hurts and it is somewhat problematic making the transfer from bed to chair without her assisting with her right arm. Another example of how you don't know how much you miss something until it's gone. I hope she gets some strength back, the sooner the better.
We got a wonderful e-mail from a long lost friend yesterday and I read Marty the e-mail while she was sitting up and she loved it. I paused once while reading to catch my breath (it’s a long e-mail) and Marty said, "Keep reading". Donna, she loved hearing from you.
After I read the e-mail aloud to Marty I needed to explain the context of some of the memories cited in the e-mail to Nikkie, our caregiver. Somehow this got us on the subject of John Denver's song, Poems Prayers and Promises. I tried to explain the times to Nikkie and how that song and Donna’s note reminded me of our really good times with our friends. Before long I was singing what I remembered of the song and then Marty joined in and helped me remember the words:
"And I have to say it now it’s been a good life all in all it’s really fine you have a chance to hang around. And lie there by the fire and watch the evening tire while all my friends and my old lady sit and pass the pipe around. And talk of poems and prayers and promises and things that we believe in how sweet it is to love someone how right it is to care......"
It's a great song. And between Marty sitting in her chair for the first time in a while, singing a beautiful, meaningful old song and reading the e-mail from Donna we had one of those moments, one of those brief, clarifying moments that I will remember for a long time. It was one of those very short meaningful events in a life. It was a moment in time, an unexpected sweet moment occurring in a place we don’t like to be; a moment I will remember tomorrow, next week and next year.
I got Marty up in her wheel chair after lunch today. She sat in her chair for about an hour and really didn't want to get back in bed. She is still pretty weak and her shoulder hurts and it is somewhat problematic making the transfer from bed to chair without her assisting with her right arm. Another example of how you don't know how much you miss something until it's gone. I hope she gets some strength back, the sooner the better.
We got a wonderful e-mail from a long lost friend yesterday and I read Marty the e-mail while she was sitting up and she loved it. I paused once while reading to catch my breath (it’s a long e-mail) and Marty said, "Keep reading". Donna, she loved hearing from you.
After I read the e-mail aloud to Marty I needed to explain the context of some of the memories cited in the e-mail to Nikkie, our caregiver. Somehow this got us on the subject of John Denver's song, Poems Prayers and Promises. I tried to explain the times to Nikkie and how that song and Donna’s note reminded me of our really good times with our friends. Before long I was singing what I remembered of the song and then Marty joined in and helped me remember the words:
"And I have to say it now it’s been a good life all in all it’s really fine you have a chance to hang around. And lie there by the fire and watch the evening tire while all my friends and my old lady sit and pass the pipe around. And talk of poems and prayers and promises and things that we believe in how sweet it is to love someone how right it is to care......"
It's a great song. And between Marty sitting in her chair for the first time in a while, singing a beautiful, meaningful old song and reading the e-mail from Donna we had one of those moments, one of those brief, clarifying moments that I will remember for a long time. It was one of those very short meaningful events in a life. It was a moment in time, an unexpected sweet moment occurring in a place we don’t like to be; a moment I will remember tomorrow, next week and next year.
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