1. Make time alone without the kids on a regular basis a priority, no matter how tired I am.
2. When I ask Keith to do something for me or need to give him a directive (hand me the remote control or the book doesn't go on that shelf, it goes on the one above it), stop repeating myself in an irritated manner when he doesn't move as quickly as I'd like.
3. Don't wait until he asks for the foot rub, offer instead.
4. Stop insisting he exercise all the time.
5. Learn to better trust that he knows what is going on with his body more than I do.
6. Be more patient and understanding with him in all that he does, says, thinks and feels.
7. Show more appreciation for all that he does for our family.
8. Keep my tone of voice in check at all times, no matter how stressed I am.
9. Keep a written account of all his medications, side effects and symptoms.
10. Stop waiting for the other shoe to shake.
Wednesday, December 30, 2009
Thursday, December 24, 2009
Love Notes
I don't normally do this because I believe in putting down my own words, not someone else's, and it is a little corny, but I think this song sums up a lot of how I feel -
The Power Of Love
Songwriters: Mende, Gunther; Rush, Jennifer; Applegate, Mary; De Rouge, Candy;
The whispers in the morning
Of lovers sleeping tight
Are rolling like thunder now
As I look in your eyes
I hold on to your body
And feel each move you make
Your voice is warm and tender
A love that I could not forsake
'Cause I am your lady
And you are my man
Whenever you reach for me
I'll do all that I can
Lost is how I'm feeling, lying in your arms
When the world outside's too
Much to take
That all ends when I'm with you
Even though there may be times
It seems I'm far away
Never wonder where I am
'Cause I am always by your side
'Cause I am your lady
And you are my man
Whenever you reach for me
I'll do all that I can
We're heading for something
Somewhere I've never been
Sometimes I am frightened
But I'm ready to learn
Of the power of love
The sound of your heart beating
Made it clear
Suddenly the feeling that I can't go on
Is light years away
'Cause I am your lady
And you are my man
Whenever you reach for me
I'll do all that I can
We're heading for something
Somewhere I've never been
Sometimes I am frightened
But I'm ready to learn
Of the power of love
Merry Christmas Babe! I love you!!
The Power Of Love
Songwriters: Mende, Gunther; Rush, Jennifer; Applegate, Mary; De Rouge, Candy;
The whispers in the morning
Of lovers sleeping tight
Are rolling like thunder now
As I look in your eyes
I hold on to your body
And feel each move you make
Your voice is warm and tender
A love that I could not forsake
'Cause I am your lady
And you are my man
Whenever you reach for me
I'll do all that I can
Lost is how I'm feeling, lying in your arms
When the world outside's too
Much to take
That all ends when I'm with you
Even though there may be times
It seems I'm far away
Never wonder where I am
'Cause I am always by your side
'Cause I am your lady
And you are my man
Whenever you reach for me
I'll do all that I can
We're heading for something
Somewhere I've never been
Sometimes I am frightened
But I'm ready to learn
Of the power of love
The sound of your heart beating
Made it clear
Suddenly the feeling that I can't go on
Is light years away
'Cause I am your lady
And you are my man
Whenever you reach for me
I'll do all that I can
We're heading for something
Somewhere I've never been
Sometimes I am frightened
But I'm ready to learn
Of the power of love
Merry Christmas Babe! I love you!!
Monday, December 21, 2009
Finally, SNOW!!!
Yeah!! After ten years on barely getting a sprinkling on the ground, we have a upwards of two feet in some locations! The kids are going to have a blast playing in all this snow, especially Rielly-Anne!
The downside is that Keith in NOT going to have a blast shoveling all this snow. It's hard enough on a younger, healthier man to shovel. I saw on the news last night that shoveling snow is the most difficult thing you can put your body (namely your heart) through. So I begged and begged Keith not to, but of course, he did. Stubborn 'ole mule! He didn't get far. Some of the porch, some of the patio, a tiny little path to the shop. I guess it was good exercise for him. He is learning when to stop and take rests and when to quit entirely. It's never easy to admit that you can't do what you used to, especially when you have PD.
I have to give a huge THANK YOU!!!!! to our wonderful neighbor Dave and to Bryan, for helping Keith get to his car that he parked at the top of the hill, and for helping him get it home. Couldn't have done it without you guys!!!
The downside is that Keith in NOT going to have a blast shoveling all this snow. It's hard enough on a younger, healthier man to shovel. I saw on the news last night that shoveling snow is the most difficult thing you can put your body (namely your heart) through. So I begged and begged Keith not to, but of course, he did. Stubborn 'ole mule! He didn't get far. Some of the porch, some of the patio, a tiny little path to the shop. I guess it was good exercise for him. He is learning when to stop and take rests and when to quit entirely. It's never easy to admit that you can't do what you used to, especially when you have PD.
I have to give a huge THANK YOU!!!!! to our wonderful neighbor Dave and to Bryan, for helping Keith get to his car that he parked at the top of the hill, and for helping him get it home. Couldn't have done it without you guys!!!
Again, Really??
I have written and rewritten this post a half-dozen times. It needs to be said I just don't know where to begin. I thought we were done with this issue, but today Keith called on his way to work -
Hey, you know that doublewide we really liked behind the church?
Uh, yeah. What about it?
Would you live there now?
I guess. This is the house we had a contract on before, right? Why? Is it still for sale?
Yes, it is. And they've rebuilt all three porches. It's been on the market for so long I'm sure they've dropped the price even more. So do you think you'd live there?
I guess so, Keith. I don't know. We can't move now.
If I could wave my magic wand and make it happen, like I've done before, would you move into it?
I guess! We'd have to figure out what to do with this house. The only way we could make that happen is if we could get someone to rent out this house. I don't know . . . There's not much of a yard and we have the dog now, with a fully fenced in yard. I'd really rather just stay here for a few more years like we agreed.
Fine.
Are you mad?
No, I'm just tire of fighting all these bills! That house is huge. It has a decent yard. We loved it before!
Well, I really like the house itself, just not the location. If you can find me something with a bigger yard, then we can move.
We'll never find anything for that low a price!
God, Keith! Can't we just stick to what we said we were going to do?! I'm so tired of going back and forth on this. I can't go another solid year of not knowing whether or not we're going to move. I'm not going through that again.
Fine.
End of conversation. For now, apparently. We've been fighting and going back and forth on whether or not to move for over a year. I just can't take it any more.
I admit that it was my idea to move. Over a year ago I did my best to convince Keith to move into a more affordable, larger and more "PD efficient" house. First, we have completely outgrown this house. We just have too many people and not enough closets, bedrooms or bathrooms. And the rooms we do have are very, very small. Second, I want a more affordable house. I need to know that when the time comes I will be able to keep a roof over our heads on my meager income. Plus, freeing up money will give us more money to put into savings and possibly pay for what I consider to be necessities and Keith considers to be luxuries - a membership at the gym or local Y, maybe a personal trainer to assist Keith, less financial stress. Third, this house is so small that there is no way you can get a wheelchair around in it. I would never be able to get him up the front steps and into the house, should that ever happen. So I pushed the issue of moving, and I pushed very hard. This was one of those subjects that I felt very strongly about. I reasoned that Keith was just going to have to accept that I was not backing down on this one - it was much too important to me and to our family. I was not at all prepared for the Keith to feel the same way, only in resistance to moving.
I finally, after many moons of talking his ear off about it, got him to agree to move, but he agreed on one condition - that we move into his childhood home, the home that his father still lives in. I reluctantly agreed. That is a very touchy subject to approach. Keith had to talk to his father about it, then his brothers to make sure they would agree to let us buy the house from them when the time came, meaning when they inherit it. Nobody wants to think along those lines, but as a family dealing with PD, we must consider all the options. So I reluctantly agreed. I like the house well enough, but I don't care much for the location and it does need a lot of work. It is much, much larger than our current house, but like most elderly people's houses, it hasn't been painted or updated in a hundred years. And the basement leaks when it rains. Basically, it's just too big a risk for me to feel comfortable taking. I don't know that I could keep up with the maintenance on a house that old, much less afford it. And I would forever be afraid that my kids would get hit by a car on the busy road in front of the house.
Keith and I have had many rounds over his father's house. I have made it very clear to him that I do not want that house but that I have resigned myself to knowing we will likely end up there. Still, I pushed the issue of moving into a separate house all together. I played a dirty trick - I dangled the possibility of buying a house outright, with no mortgage, in front of him. Our house had appreciated so much in value, thanks to the location, that we had made a killing on it. If we sold our house at top value, we could take the money and buy a larger house further outside of town, paid in cash. How sweet is that! We had the house appraised and to our delight, discovered that we could indeed come away with enough money to be mortgage free, as long as it was a doublewide and not a brick and mortar house. Excitedly, we did all the things you are supposed to do when you get your house ready to sell - we painted, cleaned the carpets, trashed or donated a ton of stuff. We alerted all our friends and family that we were moving. I gave a notice to my daycare parents that at some point in the future I would be closing down shop. But then a strange thing happened - we never moved. Hell, we never even put the house up for sale. I tried in vain to convince Keith that we needed to sell the house first, then find a place to live. But he was so afraid that we'd end up with no where to live that finding another house became his passion. For months he searched high and low, for miles and miles around, looking for something that was suitable. For months I kept asking him when the for-sale sign was going to go up. Houses in this neighborhood sell fast, he'd say. We've got to find somewhere to live! But Keith, we can always rent an apartment somewhere if we sell before we find a good house. It's not like we're going to be homeless! He just wasn't hearing me.
For six months we lived out of boxes. Everything was packed up in the shop to stage the house for selling. I finally put my foot down and insisted that we place the house for sale. To our horror, we realized through our realtor that the market had plunged so low we had lost nearly thirty thousand dollars on our house. That really put a crimp in our plans. Suddenly, we went from looking at doublewides with a nice, big yard and maybe a shop, to buying a singlewide in a trailer park. Nothing against trailer parks, but when you've had a house in a really nice neighborhood with a great yard and plenty of room, it's difficult to go from there to a trailer park. Still, I insisted. Yes, it would be difficult, but it's for the greater good of the family, I reasoned. The kids will adjust, as we all will, I argued. We can't afford to be frivolous with PD. We've just got to buck up and do what needs to be done! We can't let our emotions dictate what is in our best interests!
Keith resisted even more, sometimes. I don't know if it was related to the medication he was on or simply his desire to stay put conflicting with all the pros of moving, but it was quite a roller coaster there for awhile. Weekly we would look at homes, mostly in mobile home parks, and try to picture ourselves living there. Most were not suitable to us for one reason or another, but several proved promising. Once, Keith called to tell me about a really nice park near his work. There was a very old mobile home that would soon become available. The house was part of the park but sat near the front entrance, away from the other trailers. It had a pretty large yard with a lot of wood behind it, and it's own private entrance. Driving by, you would never have known it was actually a part of the park. The park owner was planning to remove the older home and was willing to let us place a brand new one in it's place. The lot rent was cheap enough that we could pay it monthly until we sold our house and bought a new trailer. Keith was very excited about it. But things quickly changed. By the time he got home from work that night he had a complete change of heart. You don't know what it will do to me to have to give up everything I have and move into a trailer park, he said. I'm not doing it. We'll just have to find some other way. I couldn't understand how he could be so excited about this opportunity just a few hours ago, and now he was refusing it.
This pattern would repeat itself several times over the year. Back and forth we went - do we like this mobile home park or not? Do we like this trailer or not? You don't like it but I do. I don't like it but you do. Eventually, one of us would always bring up the kids as a weapon. Horrible, yes, but effective on both ends. He talked about how much the kids needed to stay put, with all their friends, in a great neighborhood, a great yard. He said he didn't want his kids growing up with that negative stereotype about those who live in trailer parks. My response was always the same - at least they could have a roof over their heads if something were to happen. Round and round we went for a year, never really agreeing on anything. We eventually found two different doublewides in a park - one was almost brand new and the other was much older but huge and still very nice. The first one we put a contract on but the park owners refused to let us buy it because the septic system was only designed for three people, not a family of five. The other home we also had a contract on after the previous owners of our house, completely out of the blue, offered to buy it back from us. We had to back out of that one because the previous owners of our house refused to put a contract on it. Why, I don't know. But it was that second doublewide that is mentioned in the conversation in the beginning of this blog, the one that is still up for sale.
I am so hesitant to even think about moving again. After so long of arguing about this house and seeing it affect my marriage, and after praying and praying and praying for guidance in making the right decision, I finally agreed to let it go and let Keith make this decision. Although I still feel it was the wrong decision financially, I have come to realize that forcing Keith to move, forcing him into a situation that he doesn't feel comfortable with, with only make things harder on him. It will have the opposite affect of what I originally wanted - to make life easier and less stressful, financially and emotionally. We refinanced this house, did some minor renovations to add that third bedroom we so desperately needed, and finally unpacked all those boxes collecting dust in the shop.
We are eventually going to have to move, we both know it. Unless we win the lottery and can then afford to tear down this house and rebuilt here, we are going to have to move. But now is not the time, especially after refinancing. I pray that this won't continue to be an issue for another year.
Hey, you know that doublewide we really liked behind the church?
Uh, yeah. What about it?
Would you live there now?
I guess. This is the house we had a contract on before, right? Why? Is it still for sale?
Yes, it is. And they've rebuilt all three porches. It's been on the market for so long I'm sure they've dropped the price even more. So do you think you'd live there?
I guess so, Keith. I don't know. We can't move now.
If I could wave my magic wand and make it happen, like I've done before, would you move into it?
I guess! We'd have to figure out what to do with this house. The only way we could make that happen is if we could get someone to rent out this house. I don't know . . . There's not much of a yard and we have the dog now, with a fully fenced in yard. I'd really rather just stay here for a few more years like we agreed.
Fine.
Are you mad?
No, I'm just tire of fighting all these bills! That house is huge. It has a decent yard. We loved it before!
Well, I really like the house itself, just not the location. If you can find me something with a bigger yard, then we can move.
We'll never find anything for that low a price!
God, Keith! Can't we just stick to what we said we were going to do?! I'm so tired of going back and forth on this. I can't go another solid year of not knowing whether or not we're going to move. I'm not going through that again.
Fine.
End of conversation. For now, apparently. We've been fighting and going back and forth on whether or not to move for over a year. I just can't take it any more.
I admit that it was my idea to move. Over a year ago I did my best to convince Keith to move into a more affordable, larger and more "PD efficient" house. First, we have completely outgrown this house. We just have too many people and not enough closets, bedrooms or bathrooms. And the rooms we do have are very, very small. Second, I want a more affordable house. I need to know that when the time comes I will be able to keep a roof over our heads on my meager income. Plus, freeing up money will give us more money to put into savings and possibly pay for what I consider to be necessities and Keith considers to be luxuries - a membership at the gym or local Y, maybe a personal trainer to assist Keith, less financial stress. Third, this house is so small that there is no way you can get a wheelchair around in it. I would never be able to get him up the front steps and into the house, should that ever happen. So I pushed the issue of moving, and I pushed very hard. This was one of those subjects that I felt very strongly about. I reasoned that Keith was just going to have to accept that I was not backing down on this one - it was much too important to me and to our family. I was not at all prepared for the Keith to feel the same way, only in resistance to moving.
I finally, after many moons of talking his ear off about it, got him to agree to move, but he agreed on one condition - that we move into his childhood home, the home that his father still lives in. I reluctantly agreed. That is a very touchy subject to approach. Keith had to talk to his father about it, then his brothers to make sure they would agree to let us buy the house from them when the time came, meaning when they inherit it. Nobody wants to think along those lines, but as a family dealing with PD, we must consider all the options. So I reluctantly agreed. I like the house well enough, but I don't care much for the location and it does need a lot of work. It is much, much larger than our current house, but like most elderly people's houses, it hasn't been painted or updated in a hundred years. And the basement leaks when it rains. Basically, it's just too big a risk for me to feel comfortable taking. I don't know that I could keep up with the maintenance on a house that old, much less afford it. And I would forever be afraid that my kids would get hit by a car on the busy road in front of the house.
Keith and I have had many rounds over his father's house. I have made it very clear to him that I do not want that house but that I have resigned myself to knowing we will likely end up there. Still, I pushed the issue of moving into a separate house all together. I played a dirty trick - I dangled the possibility of buying a house outright, with no mortgage, in front of him. Our house had appreciated so much in value, thanks to the location, that we had made a killing on it. If we sold our house at top value, we could take the money and buy a larger house further outside of town, paid in cash. How sweet is that! We had the house appraised and to our delight, discovered that we could indeed come away with enough money to be mortgage free, as long as it was a doublewide and not a brick and mortar house. Excitedly, we did all the things you are supposed to do when you get your house ready to sell - we painted, cleaned the carpets, trashed or donated a ton of stuff. We alerted all our friends and family that we were moving. I gave a notice to my daycare parents that at some point in the future I would be closing down shop. But then a strange thing happened - we never moved. Hell, we never even put the house up for sale. I tried in vain to convince Keith that we needed to sell the house first, then find a place to live. But he was so afraid that we'd end up with no where to live that finding another house became his passion. For months he searched high and low, for miles and miles around, looking for something that was suitable. For months I kept asking him when the for-sale sign was going to go up. Houses in this neighborhood sell fast, he'd say. We've got to find somewhere to live! But Keith, we can always rent an apartment somewhere if we sell before we find a good house. It's not like we're going to be homeless! He just wasn't hearing me.
For six months we lived out of boxes. Everything was packed up in the shop to stage the house for selling. I finally put my foot down and insisted that we place the house for sale. To our horror, we realized through our realtor that the market had plunged so low we had lost nearly thirty thousand dollars on our house. That really put a crimp in our plans. Suddenly, we went from looking at doublewides with a nice, big yard and maybe a shop, to buying a singlewide in a trailer park. Nothing against trailer parks, but when you've had a house in a really nice neighborhood with a great yard and plenty of room, it's difficult to go from there to a trailer park. Still, I insisted. Yes, it would be difficult, but it's for the greater good of the family, I reasoned. The kids will adjust, as we all will, I argued. We can't afford to be frivolous with PD. We've just got to buck up and do what needs to be done! We can't let our emotions dictate what is in our best interests!
Keith resisted even more, sometimes. I don't know if it was related to the medication he was on or simply his desire to stay put conflicting with all the pros of moving, but it was quite a roller coaster there for awhile. Weekly we would look at homes, mostly in mobile home parks, and try to picture ourselves living there. Most were not suitable to us for one reason or another, but several proved promising. Once, Keith called to tell me about a really nice park near his work. There was a very old mobile home that would soon become available. The house was part of the park but sat near the front entrance, away from the other trailers. It had a pretty large yard with a lot of wood behind it, and it's own private entrance. Driving by, you would never have known it was actually a part of the park. The park owner was planning to remove the older home and was willing to let us place a brand new one in it's place. The lot rent was cheap enough that we could pay it monthly until we sold our house and bought a new trailer. Keith was very excited about it. But things quickly changed. By the time he got home from work that night he had a complete change of heart. You don't know what it will do to me to have to give up everything I have and move into a trailer park, he said. I'm not doing it. We'll just have to find some other way. I couldn't understand how he could be so excited about this opportunity just a few hours ago, and now he was refusing it.
This pattern would repeat itself several times over the year. Back and forth we went - do we like this mobile home park or not? Do we like this trailer or not? You don't like it but I do. I don't like it but you do. Eventually, one of us would always bring up the kids as a weapon. Horrible, yes, but effective on both ends. He talked about how much the kids needed to stay put, with all their friends, in a great neighborhood, a great yard. He said he didn't want his kids growing up with that negative stereotype about those who live in trailer parks. My response was always the same - at least they could have a roof over their heads if something were to happen. Round and round we went for a year, never really agreeing on anything. We eventually found two different doublewides in a park - one was almost brand new and the other was much older but huge and still very nice. The first one we put a contract on but the park owners refused to let us buy it because the septic system was only designed for three people, not a family of five. The other home we also had a contract on after the previous owners of our house, completely out of the blue, offered to buy it back from us. We had to back out of that one because the previous owners of our house refused to put a contract on it. Why, I don't know. But it was that second doublewide that is mentioned in the conversation in the beginning of this blog, the one that is still up for sale.
I am so hesitant to even think about moving again. After so long of arguing about this house and seeing it affect my marriage, and after praying and praying and praying for guidance in making the right decision, I finally agreed to let it go and let Keith make this decision. Although I still feel it was the wrong decision financially, I have come to realize that forcing Keith to move, forcing him into a situation that he doesn't feel comfortable with, with only make things harder on him. It will have the opposite affect of what I originally wanted - to make life easier and less stressful, financially and emotionally. We refinanced this house, did some minor renovations to add that third bedroom we so desperately needed, and finally unpacked all those boxes collecting dust in the shop.
We are eventually going to have to move, we both know it. Unless we win the lottery and can then afford to tear down this house and rebuilt here, we are going to have to move. But now is not the time, especially after refinancing. I pray that this won't continue to be an issue for another year.
Friday, December 11, 2009
Parkinson's vs. Pregnancy
Parkinson's Disease and Pregnancy go together about as well as oil and water. The two just don't mix at all. When one partner has PD and the other is pregnant, how do you decide whose turn it is to be pampered? Which person gets the evening back rub or the foot soak or gets to complain the loudest and longest?
ME: getting up from the sofa to wash the dishes
KEITH: standing at the kitchen counter taking his PD medication
ME: begin to wash dishes, then stop for a rest, stretch my back and sigh
KEITH: looks over : What's wrong?
ME: lamenting: Every time I think I have enough energy to get something done, I get in to it and realize I am much more tired than I originally thought. I don't have the energy to finish anything anymore!
KEITH: a wide-eyed look of wonder on his face: Wow! Pregnancy is just like Parkinson's, isn't it?!
ME: a squinty-eyed look of irritation on my face: NO! Pregnancy is nothing like Parkinson's!
KEITH: stammering: Well, I, uh, ummm, I just meant that PD makes me feel tired and achy like pregnancy does to ----
ME: pregnancy-induced hormones raging: Half the damn world feels tired and achy, Keith, but that doesn't mean they have anything similiar to PD. I have a human being growing inside me. There is literally a completely separate person inside my body. That is nothing like Parkinson's whatsoever!
KEITH: in a don't-make-any-sudden-moves posture: Look, I just meant that -----
ME: shaking a rolling pin angrily about: I know what you meant! So stop turning every conversation about this pregnancy into a PD related thing. I don't mean to be ugly, but you are going to have PD for the rest of your life. We have that long to discuss it. I am only going to be pregnant for a couple more months. Can I at least have that long? Can I please just have my day?!?!?!
Okay, so maybe I didn't literally shake a rolling pin around, but I wanted to. That conversation did actually take place, as embarrased as I am to admit it. It took a while, but Keith and I finally managed to work out a system we both found helpful. Basically, whichever one of us was still somehow on our feet at the end of the day had to pamper the one that had long since collapsed. So the moral of the story is - PD and pregnancy can, at times, be very similar, thus a give and take relationship of pure pampering is absolutely essential to maintaining the happiness and well-being of the couple.
(the real moral of the story is to always, ALWAYS, pamper the pregnant wife)
ME: getting up from the sofa to wash the dishes
KEITH: standing at the kitchen counter taking his PD medication
ME: begin to wash dishes, then stop for a rest, stretch my back and sigh
KEITH: looks over : What's wrong?
ME: lamenting: Every time I think I have enough energy to get something done, I get in to it and realize I am much more tired than I originally thought. I don't have the energy to finish anything anymore!
KEITH: a wide-eyed look of wonder on his face: Wow! Pregnancy is just like Parkinson's, isn't it?!
ME: a squinty-eyed look of irritation on my face: NO! Pregnancy is nothing like Parkinson's!
KEITH: stammering: Well, I, uh, ummm, I just meant that PD makes me feel tired and achy like pregnancy does to ----
ME: pregnancy-induced hormones raging: Half the damn world feels tired and achy, Keith, but that doesn't mean they have anything similiar to PD. I have a human being growing inside me. There is literally a completely separate person inside my body. That is nothing like Parkinson's whatsoever!
KEITH: in a don't-make-any-sudden-moves posture: Look, I just meant that -----
ME: shaking a rolling pin angrily about: I know what you meant! So stop turning every conversation about this pregnancy into a PD related thing. I don't mean to be ugly, but you are going to have PD for the rest of your life. We have that long to discuss it. I am only going to be pregnant for a couple more months. Can I at least have that long? Can I please just have my day?!?!?!
Okay, so maybe I didn't literally shake a rolling pin around, but I wanted to. That conversation did actually take place, as embarrased as I am to admit it. It took a while, but Keith and I finally managed to work out a system we both found helpful. Basically, whichever one of us was still somehow on our feet at the end of the day had to pamper the one that had long since collapsed. So the moral of the story is - PD and pregnancy can, at times, be very similar, thus a give and take relationship of pure pampering is absolutely essential to maintaining the happiness and well-being of the couple.
(the real moral of the story is to always, ALWAYS, pamper the pregnant wife)
Tuesday, December 8, 2009
Back By Request
Sacrifice and the Things I Thought I Knew
Last night I was sitting on our large front porch thinking about sacrifice and how it relates to PD and our situation. I always go back and forth on this one. Some people, I know, feel I am sacrificing a lot to be the wife of a PWP. Do I feel that way? Well, yes and no. Last night while sitting on the porch I was specifically thinking about the porch itself, and how much I love it. I love that huge, covered, wrap-around porch. I love the house attached to the porch, and I really love the view from the porch. It is a fact that one day we will have to give it all up. Financially there is no way for us to pay off the house and build an addition. We need a larger house, but we also need a paid-for house. Not going to happen here. While there are several other options available to us, we know with certainty that the first house we purchased together, the house our daughter was born in, we will have to give up. Our house has fallen victim to PD.
Sacrifice. We will sacrifice our house, our home, to ease the financial burden of the future. I will be sad to leave the home I so dearly love, but as always, I will be okay. We will be okay. But it's just a house. I can make any house a home for us. What about all the other sacrifices made in the name of PD? Can I list them all, one by one? And if so, would it be a wise thing to do? Would it embitter me and make me angry? Would it make me sad and depressed? I don't think so . . . .
See, here's the thing about sacrifice - it's not always about what you've lost. I have found that sacrifice is much more about what you gain. In Mitch Albom's book The Five People You Meet In Heaven, the character named Captain says this of sacrifice -
" . . . Sacrifice is a part of life. It's supposed to be. It's not something to regret. It's something to aspire to. Little sacrifices. Big sacrifices. A mother works so her son can go to school. A daughter moves home to take care of her sick father. . . . That's the thing. Sometimes when you sacrifice something precious, you're not really losing it. You're just passing it on to someone else."
So listing all the sacrifices I have personally made for PD wouldn't necessarily be a bad thing. Certainly not if they are supposed to happen, as a normal part of life. But there is a big problem in listing all my sacrifices. I don't really feel as if I am sacrificing anything, except for my home. So many people have pointed them all out to me -
I am sacrificing my youth.
I am sacrificing the large family I have always wanted to have.
I am sacrificing my financial security and my retirement.
I am sacrificing my children having a young and healthy father.
I am sacrificing my emotional and spiritual well being.
I am sacrificing my home.
Over and over again I hear it all, from family and friends with the best of intentions, to nosy strangers in the checkout line at Walmart. Everyone is wrought with sorrow and regret and an opinion about what I am sacrificing in my marriage to a middle aged man with PD.
But what about my choices? Where does choice and decision come into play? I agree that technically I may be sacrificing all of the above, but if sacrifice is a part of life and something to aspire to, and if I willingly made these choices and decided to live this life, then all these sacrifices have become noble rather than regretful.
I knew from day one there was a very high probability of Keith being diagnosed with PD. I saw the tremors on our first date. The writing was on the wall, so to speak. I decided to enter into a relationship with a man that in all likelihood, would be diagnosed with PD. I decided to marry that same man, and have his children. All the things that go along with loving and being married to a PWP have been choices and decisions I have made, WE have made, together. It really takes the edge off sacrifice when it becomes a choice.
It's all the things I didn't know that ring true of sacrifice now. For instance, I knew that one day our daughter would be too heavy for Keith to pick up and hold. What I didn't know was how disappointing it would be when that day came much sooner than expected. I knew that when my son recently bought his first guitar he would want Keith to show him how to play and that Keith would have a difficult time doing so. What I didn't know was how my heart would leap into my throat with pride at my son's loving, thoughtful and understanding reaction to Keith's inability to play guitar with him. I knew that the symptoms of PD include facial masking and apathy. What I didn't know was how difficult it would be to no longer read my husband's emotions and thoughts in his face. I knew that stress and excitement would cause Keith's tremors to become more pronounced. What I didn't know was that simply telling a story about a stressful event that took place more than five years ago could still cause his tremors to worsen. I didn't know how angry I would become at total strangers getting impatient with Keith for walking slowly in front of them at the grocery store. I didn't know that feeling Keith's tremors in the middle of the night would be gut wrenching and deeply comforting all at the same time. I didn't know that I would hate his hobby for robbing me of time with him, but still be grateful to it for keeping him happy and motivated. I didn't know that I would be so willing to sacrifice nearly every single thing I have to keep Keith healthy. I didn't know it would become so important to me to have children with this man for reasons no one else seems to understand. I didn't know I would get so little support and understanding from those closest to me. I didn't know that an elderly PWP sitting in a wheelchair could teach me so much without ever saying a word. I didn't know how much I would enjoy attending a PD support group. I didn't know I could love someone other than my children so completely and unconditionally. I didn't know that my biggest fears and greatest dreams could coincide and happen all at the same time. I didn't know that I would be given so much more than I ever hoped for.
What is sacrifice without the choice and decision that precedes it? I made the choice to live this life, sacrifices and all. Yes, there were many, many things I did not know would materialize when I made that choice. Perhaps you could call that sacrifice. On paper, or this blog, maybe it doesn't always look so good. Hell, some people could get depressed just by reading this post. But regardless of how it all looks, regardless of all the sacrifices being made, in my heart I truly feel as if I have it all. These are not sacrifices made because of PD. They are decisions made in the name of love. I have a good man who loves me dearly and adores our children, who would move heaven and earth to make us happy. I have great kids who make me proud everyday. I have a nice home in a nice neighborhood. I have the proverbial life - the little house with the white picket fence. I have a wonderful life of which no sacrifice is too great. That I do know.
Last night I was sitting on our large front porch thinking about sacrifice and how it relates to PD and our situation. I always go back and forth on this one. Some people, I know, feel I am sacrificing a lot to be the wife of a PWP. Do I feel that way? Well, yes and no. Last night while sitting on the porch I was specifically thinking about the porch itself, and how much I love it. I love that huge, covered, wrap-around porch. I love the house attached to the porch, and I really love the view from the porch. It is a fact that one day we will have to give it all up. Financially there is no way for us to pay off the house and build an addition. We need a larger house, but we also need a paid-for house. Not going to happen here. While there are several other options available to us, we know with certainty that the first house we purchased together, the house our daughter was born in, we will have to give up. Our house has fallen victim to PD.
Sacrifice. We will sacrifice our house, our home, to ease the financial burden of the future. I will be sad to leave the home I so dearly love, but as always, I will be okay. We will be okay. But it's just a house. I can make any house a home for us. What about all the other sacrifices made in the name of PD? Can I list them all, one by one? And if so, would it be a wise thing to do? Would it embitter me and make me angry? Would it make me sad and depressed? I don't think so . . . .
See, here's the thing about sacrifice - it's not always about what you've lost. I have found that sacrifice is much more about what you gain. In Mitch Albom's book The Five People You Meet In Heaven, the character named Captain says this of sacrifice -
" . . . Sacrifice is a part of life. It's supposed to be. It's not something to regret. It's something to aspire to. Little sacrifices. Big sacrifices. A mother works so her son can go to school. A daughter moves home to take care of her sick father. . . . That's the thing. Sometimes when you sacrifice something precious, you're not really losing it. You're just passing it on to someone else."
So listing all the sacrifices I have personally made for PD wouldn't necessarily be a bad thing. Certainly not if they are supposed to happen, as a normal part of life. But there is a big problem in listing all my sacrifices. I don't really feel as if I am sacrificing anything, except for my home. So many people have pointed them all out to me -
I am sacrificing my youth.
I am sacrificing the large family I have always wanted to have.
I am sacrificing my financial security and my retirement.
I am sacrificing my children having a young and healthy father.
I am sacrificing my emotional and spiritual well being.
I am sacrificing my home.
Over and over again I hear it all, from family and friends with the best of intentions, to nosy strangers in the checkout line at Walmart. Everyone is wrought with sorrow and regret and an opinion about what I am sacrificing in my marriage to a middle aged man with PD.
But what about my choices? Where does choice and decision come into play? I agree that technically I may be sacrificing all of the above, but if sacrifice is a part of life and something to aspire to, and if I willingly made these choices and decided to live this life, then all these sacrifices have become noble rather than regretful.
I knew from day one there was a very high probability of Keith being diagnosed with PD. I saw the tremors on our first date. The writing was on the wall, so to speak. I decided to enter into a relationship with a man that in all likelihood, would be diagnosed with PD. I decided to marry that same man, and have his children. All the things that go along with loving and being married to a PWP have been choices and decisions I have made, WE have made, together. It really takes the edge off sacrifice when it becomes a choice.
It's all the things I didn't know that ring true of sacrifice now. For instance, I knew that one day our daughter would be too heavy for Keith to pick up and hold. What I didn't know was how disappointing it would be when that day came much sooner than expected. I knew that when my son recently bought his first guitar he would want Keith to show him how to play and that Keith would have a difficult time doing so. What I didn't know was how my heart would leap into my throat with pride at my son's loving, thoughtful and understanding reaction to Keith's inability to play guitar with him. I knew that the symptoms of PD include facial masking and apathy. What I didn't know was how difficult it would be to no longer read my husband's emotions and thoughts in his face. I knew that stress and excitement would cause Keith's tremors to become more pronounced. What I didn't know was that simply telling a story about a stressful event that took place more than five years ago could still cause his tremors to worsen. I didn't know how angry I would become at total strangers getting impatient with Keith for walking slowly in front of them at the grocery store. I didn't know that feeling Keith's tremors in the middle of the night would be gut wrenching and deeply comforting all at the same time. I didn't know that I would hate his hobby for robbing me of time with him, but still be grateful to it for keeping him happy and motivated. I didn't know that I would be so willing to sacrifice nearly every single thing I have to keep Keith healthy. I didn't know it would become so important to me to have children with this man for reasons no one else seems to understand. I didn't know I would get so little support and understanding from those closest to me. I didn't know that an elderly PWP sitting in a wheelchair could teach me so much without ever saying a word. I didn't know how much I would enjoy attending a PD support group. I didn't know I could love someone other than my children so completely and unconditionally. I didn't know that my biggest fears and greatest dreams could coincide and happen all at the same time. I didn't know that I would be given so much more than I ever hoped for.
What is sacrifice without the choice and decision that precedes it? I made the choice to live this life, sacrifices and all. Yes, there were many, many things I did not know would materialize when I made that choice. Perhaps you could call that sacrifice. On paper, or this blog, maybe it doesn't always look so good. Hell, some people could get depressed just by reading this post. But regardless of how it all looks, regardless of all the sacrifices being made, in my heart I truly feel as if I have it all. These are not sacrifices made because of PD. They are decisions made in the name of love. I have a good man who loves me dearly and adores our children, who would move heaven and earth to make us happy. I have great kids who make me proud everyday. I have a nice home in a nice neighborhood. I have the proverbial life - the little house with the white picket fence. I have a wonderful life of which no sacrifice is too great. That I do know.
Take Your Pick
I have posted about this in the past, and I am sure I will post about it again at some point. I just can't seem to wrap my mind around it.
There seems to be general consensus among the middle-aged to elderly age group of women who are care partners to husbands with PD that had they known their spouses would be stricken with PD, they would not have married them. Certainly not all of them feel this way, but I have come across a large number that do. In fact, most of the ones I have met feel this way. While I don't fault or judge anyone their own feelings, I can not fathom that I could ever feel this way. I can understand how, at that point in the disease, they would feel overwhelmed and burned out. Their husbands are in the later stages of PD and can do very little, if anything, for themselves. For me, this begs the question: would I be willing to trade places with them in exchange for more time with Keith?
I know a lady who has been married for over 30 years. They were blessed with a happy marriage, two children and several grandchildren. Her husband is now completely disabled and she has said to me several times that she wishes she had never married the man. Her words, not mine.
Could I trade places with her? Would I be willing to give up less time with Keith, who is slowly progressing but still in pretty good health, for more time with him, even though it would mean his health would be far worse?
I admit that I have thought many times of doing so, if it were possible. It is no secret that Keith and I have time working hard against us. I am often envious of these same women because they have had an entire lifetime with their husbands. They have raised their children together, seen them grow into productive adults. They have held their grandchildren, planned retirement; they've have lived a full life together. They have something Keith and I may never have - a pre-PD marriage. It seems so sad to want to throw it all away because of a few years of bad health. Those long years of good health are very tempting, though.
But I have had something they will never know - foresight. Now, I'm sure at this stage of the disease they know what to expect. But what about in the very beginning, when they were blindsided by the diagnosis of PD? Would they have preferred to know ahead of time, as I did, what to expect? Would they be better able to deal with PD had they had more time to prepare? We can only speculate about how we might feel given a certain situation, but I suspect these women would have run in leaps and bounds away from their prospective husbands had they known what was to come. I, on the other hand, am eternally grateful for the advantage of knowing in advance about PD. Keith did not choose to get PD, but in a way, I did. I chose PD. I chose to marry and have children with a man suffering from Parkinson's Disease. If knowledge is power, then I definitely have the upper-hand, because that power has not only prepared me for what is to come, but it has helped me to realize how precious our lives together really are. So as much as I would like more time with Keith, more healthy time with him, I have chosen this life, and I wouldn't change it for anything.
Live And Let Live
As I mentioned in the previous post, I have been a bit disgruntled with Keith over his lack of concern for his health. If you ask him about it he will tell you that he is, in fact, doing whatever he can to fight PD and keep his health in order. But if you really press him, all he can come up with is that he is taking his medication. That's it. He is taking his medication. That is all he does in the way of staying healthy.
I do not think words can accurately describe just how mind-numbingly frustrating it is to know that your husband has a progressively debilitating disease, and there are certain things he can do to slow down the progression of that disease, but he refuses to do them. This year has been especially difficult for me as I have really put forth a huge effort to make a difference for him, particularly since his diabetes diagnosis.
I spent a lot of time researching which whole foods are the healthiest and best fit his needs. I have gone to local farm co-ops and produce stands to purchase the absolute best of the best of fruits and vegetables. I found interesting recipes to try to prevent him from getting bored with eating so much "rabbit food." I spent hours each week washing, peeling, chopping and conveniently storing food so he wouldn't have to do it himself. A simple trip to the grocery store became an event that took hours as I thoroughly read each and every food label, or stood in the same isle for twenty minutes trying to decide which snack foods he could eat and which ones he should avoid. I have spent hundreds of dollars on exercise books and dvds designed especially for PD patients. I tried relentlessly to get him involved with me in my daily morning yoga routine. On my mind constantly was how can I make Keith more comfortable? or what else can I do to keep Keith healthy? Almost obsessively, I could not enter a store, any store, without all my antennas and feelers going up as radar to find him just one more item to help, just one more exercise book to try, just one more healthy vegetable. When you combine that with several years of setting up blogs, dragging him to conferences and support groups, and doing almost everything I can think of to get him involved in the PD community, I was beginning to get a little exhausted. I began to fear burning out before the really bad stuff, the nitty-gritty nasty side of PD had even set in. I was feeling very unappreciated because it was an uphill fight the entire way. If I didn't force the issue, he wouldn't bother with it. I began to think why do I have to do all the work when he's the one with PD?! I finally realized how big a problem it was when I had the thought I wish he was disabled so I can force him to be healthy. I wish my husband was disabled so I can force him to be healthy. Hmmm . . . . doesn't really make sense, does it? But to me, at the time, it made perfect sense. If disabled, he would have no choice but to eat what I prepare and participate in physical therapy if I took him. And at least then I would have a real reason for being so exhausted and for doing so much. I realized that thoughts and feelings such as those were only detrimental to myself and my marriage. So I took a step back. Actually, I took a huge leap, several leaps, back. I stopped everything and determined that I would spend the remainder of the year focusing on the new baby's arrival and our family, our marriage.
Keith and I have always had opposing methods of dealing with PD. He prefers the I'm not going to let it ruin my life so I'll just ignore it approach, while I favor the let's do every single thing we possibly can to fight it, even if it means turning our entire lives upside down method. Clearly, these two very different ways of handling PD clash. Keith insists that I need to trust him to do what is right, but try as I might, I just can't trust a guy who smokes a pack a day, eats sausage biscuits from Hardees every morning, and avoids all form of exercise like the plague. Yeah, sure. But, as has been the case with this disease from day one, I am learning as I go. I am learning to back off and let Keith do his own thing. I am learning that though I can't trust him to properly handle his health, I trust myself to be able to handle what comes of that. I am also learning that this entire ordeal, if that's what you want to call PD, is a learning process itself, and that nothing related to this disease is easy, nothing stays the same, everything changes constantly, sometimes in a matter of moments. With that I find comfort, knowing that although Keith and I may differ greatly in our methods, that too is subject to change at any given time. That knowledge offers hope, and it is hope that keeps me going.
I do not think words can accurately describe just how mind-numbingly frustrating it is to know that your husband has a progressively debilitating disease, and there are certain things he can do to slow down the progression of that disease, but he refuses to do them. This year has been especially difficult for me as I have really put forth a huge effort to make a difference for him, particularly since his diabetes diagnosis.
I spent a lot of time researching which whole foods are the healthiest and best fit his needs. I have gone to local farm co-ops and produce stands to purchase the absolute best of the best of fruits and vegetables. I found interesting recipes to try to prevent him from getting bored with eating so much "rabbit food." I spent hours each week washing, peeling, chopping and conveniently storing food so he wouldn't have to do it himself. A simple trip to the grocery store became an event that took hours as I thoroughly read each and every food label, or stood in the same isle for twenty minutes trying to decide which snack foods he could eat and which ones he should avoid. I have spent hundreds of dollars on exercise books and dvds designed especially for PD patients. I tried relentlessly to get him involved with me in my daily morning yoga routine. On my mind constantly was how can I make Keith more comfortable? or what else can I do to keep Keith healthy? Almost obsessively, I could not enter a store, any store, without all my antennas and feelers going up as radar to find him just one more item to help, just one more exercise book to try, just one more healthy vegetable. When you combine that with several years of setting up blogs, dragging him to conferences and support groups, and doing almost everything I can think of to get him involved in the PD community, I was beginning to get a little exhausted. I began to fear burning out before the really bad stuff, the nitty-gritty nasty side of PD had even set in. I was feeling very unappreciated because it was an uphill fight the entire way. If I didn't force the issue, he wouldn't bother with it. I began to think why do I have to do all the work when he's the one with PD?! I finally realized how big a problem it was when I had the thought I wish he was disabled so I can force him to be healthy. I wish my husband was disabled so I can force him to be healthy. Hmmm . . . . doesn't really make sense, does it? But to me, at the time, it made perfect sense. If disabled, he would have no choice but to eat what I prepare and participate in physical therapy if I took him. And at least then I would have a real reason for being so exhausted and for doing so much. I realized that thoughts and feelings such as those were only detrimental to myself and my marriage. So I took a step back. Actually, I took a huge leap, several leaps, back. I stopped everything and determined that I would spend the remainder of the year focusing on the new baby's arrival and our family, our marriage.
Keith and I have always had opposing methods of dealing with PD. He prefers the I'm not going to let it ruin my life so I'll just ignore it approach, while I favor the let's do every single thing we possibly can to fight it, even if it means turning our entire lives upside down method. Clearly, these two very different ways of handling PD clash. Keith insists that I need to trust him to do what is right, but try as I might, I just can't trust a guy who smokes a pack a day, eats sausage biscuits from Hardees every morning, and avoids all form of exercise like the plague. Yeah, sure. But, as has been the case with this disease from day one, I am learning as I go. I am learning to back off and let Keith do his own thing. I am learning that though I can't trust him to properly handle his health, I trust myself to be able to handle what comes of that. I am also learning that this entire ordeal, if that's what you want to call PD, is a learning process itself, and that nothing related to this disease is easy, nothing stays the same, everything changes constantly, sometimes in a matter of moments. With that I find comfort, knowing that although Keith and I may differ greatly in our methods, that too is subject to change at any given time. That knowledge offers hope, and it is hope that keeps me going.
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