Well, it was a hard pill to swallow but when my son told me he thought I might make my husband feel like a burden from the story I told of our Mexican trip. I had to
STOP
and think
maybe he did but I didn't think so. ~~
My story was told with a lightheartedness and a sense of humor as to how a single event can turn into a time consuming adventure when you're traveling with someone with special needs and disabilities. I told the story with a lot of detail so the person listening could get the sense of how long the simplest tasks can take and how quickly and easily things can go wrong.
Well,
I was reminded that my husband may be bothered by this so I promised my son I would ask him, sure-I would know his answer. I mean heck if you can't laugh at life....
I mean what's the alternative?
Cry?
So I asked. And do you know what he said?
Not what I expected, that's for sure.
He said, that "yes, it did make him feel like a burden."
Did you see my face fall just now?
In my desire to cope with our shared circumstances and make light of them I was hurting my husband and he was wearing his humility silently.
Did you ever feel justified and like a heel at the same time?
Justified-because I was sure this was a healthy way to combat the frustration of caring for someone with his unique needs
and
like a heel -because I was wrong.
Now what?
To do justly
to love mercy and
to walk humbly with Thy God.
That is what the Lord requires of me.
Fail.
Well. So I learned something. I'm not always so fun to live with either. We love, we hurt, we break, we cry, we struggle, we apologize..."A righteous man falls seven times and rises again"
God is still teaching me and I'm glad I can still hear
and change.
Friday, April 22, 2016
Monday, April 18, 2016
The Sounds...of Silence
The day started out pretty good. The cat left me alone for a good part of the morning and I was able to sleep until 8:30am. Kind of nice.
My husband must have slept well too, all through the night, which explains why I slept so solidly.
Pain didn't wake him.
But it didn't take long into the day before he was shutting himself out from the world as he dealt with the pain that did come.
We managed to get to church on time. And he managed to sleep through the message again, head down, leaning over
and over
and over - head pops back up right before he loses complete balance, for a moment and then it starts again.
We sat through lunch in silence. His head down once again.
Sometimes he was reading the newspaper, sometimes he was sleeping, sometimes he was just trying to relieve the pressure from the pain.
I don't say anything.
He doesn't answer much when he's like this.
So I just let him handle it alone. What can I do? I offered all the help I know how to give and it doesn't change anything. He's in pain and he doesn't think there is anything that can or will help.
So there you go.
I mean if I was in that much pain I would be looking for answers, for relief....whatever I could afford..anything within reason.
I don't get it.
Well anyway, he had offered to vacuum the kitchen yesterday, was in too much pain to do it but after taking some meds for his pain he seemed to think he could do it today.
So, that involves me getting the vacuum, me plugging it in and the him wheeling around in his electric wheelchair trying to do it. It's not a thorough job, it's not even usually a very good job but it gets the worst of the debris up off the ground but today
no.
When he asked me to move the vacuum to the area of the floor on the other side of the stove, I saw where he had been and asked him if it was done.
Oh my.
At that point, I just told him to go out into the other room and I would finish it up.
~pause~
Ho Hum.
There are just no words.
The rest of the day, I might as well lived alone.
No words from him.
I was baking and cleaning up in the kitchen with the music on.
Music that made me happy.
Music that made me want to dance. Music that made want to sing.
Music that made me not feel
so alone.
He had the TV on.
He slipped in and out of sleep.
His head was down.
He was quiet.
I guess he was alone too.
But he did not have silence.
He had the screaming of his body from the pain.
And he tried to silence it with his head down, with quietness and with sleep.
My husband must have slept well too, all through the night, which explains why I slept so solidly.
Pain didn't wake him.
But it didn't take long into the day before he was shutting himself out from the world as he dealt with the pain that did come.
We managed to get to church on time. And he managed to sleep through the message again, head down, leaning over
and over
and over - head pops back up right before he loses complete balance, for a moment and then it starts again.
We sat through lunch in silence. His head down once again.
Sometimes he was reading the newspaper, sometimes he was sleeping, sometimes he was just trying to relieve the pressure from the pain.
I don't say anything.
He doesn't answer much when he's like this.
So I just let him handle it alone. What can I do? I offered all the help I know how to give and it doesn't change anything. He's in pain and he doesn't think there is anything that can or will help.
So there you go.
I mean if I was in that much pain I would be looking for answers, for relief....whatever I could afford..anything within reason.
I don't get it.
Well anyway, he had offered to vacuum the kitchen yesterday, was in too much pain to do it but after taking some meds for his pain he seemed to think he could do it today.
So, that involves me getting the vacuum, me plugging it in and the him wheeling around in his electric wheelchair trying to do it. It's not a thorough job, it's not even usually a very good job but it gets the worst of the debris up off the ground but today
no.
When he asked me to move the vacuum to the area of the floor on the other side of the stove, I saw where he had been and asked him if it was done.
Oh my.
At that point, I just told him to go out into the other room and I would finish it up.
~pause~
Ho Hum.
There are just no words.
The rest of the day, I might as well lived alone.
No words from him.
I was baking and cleaning up in the kitchen with the music on.
Music that made me happy.
Music that made me want to dance. Music that made want to sing.
Music that made me not feel
so alone.
He had the TV on.
He slipped in and out of sleep.
His head was down.
He was quiet.
I guess he was alone too.
But he did not have silence.
He had the screaming of his body from the pain.
And he tried to silence it with his head down, with quietness and with sleep.
Friday, April 15, 2016
It's Time
March 15, 2016
Tonight's question:
"You don't feel loved, wanted or protected by me do you?"
I can't always deal with these questions when I first walk in the door. My focus is on greeting the dogs, getting changed, greeting him with a kiss, emptying urinals, and feeding the animals. Then, it's walking the animals and starting in on dinner. Answering a question he has pondered and fretted on all day deserves more than a quick, flippant answer in the midst of my daily, singly focused tasks.
We were going to an MS Support Group that night so I told him to ask me again on the ride over.
Of course, my busyness did not allow me to think on the question anymore and he hit me with it again as soon as the car hit reverse on the way out of the driveway.
And so, I paused and dragged out my words as I carefully considered how I would answer this delicate question.
MS has robbed my spouse of a lot of the things he took pride in: his physique, his stature, his athletic ability. And now he is questioning his value to me. He is having a hard time understanding that I just love him
for him.
I don't always understand it either. Perhaps, it is spiritual in nature, something beyond me and above me. Something that just can't be explained.
I used to say I loved him for his inner strength, only to find out it was all bravado masking insecurity.
He certainly has not been an easy person to love. He was a hot head given to outbursts of anger. He was critical and controlling and not given easy to laughter. He was hard on the kids on things that didn't really matter and he didn't keep his promises. He often made me cry and hurt me deeply. He was terribly jealous and never truly trusted me. He never seemed truly apologetic. In fact, I always had to tell him all he had to was apologize
and so
he would just.... say the words.
I forgave him every time
anyway.
I tried to keep it from happening. But there was wedge of resentment that was constantly trying to grow between us.
So, as he has all this time to think and he reflects on our life together, these questions arise.
As he feels unlovable and unworthy, he wonders why I have stayed.
He wonders what role does he play now as more and more of his abilities are taken away.
His questions are justified but I can't answer it the way he needs.
I have determined to be honest with him. I have not white washed the hurt he has caused me over the years. I have not held back the truth as I have experienced it. It has not been easy for him to hear and I hurt for him
but he needs to know.
Maybe I'm wrong.
But part of me feels this is my time.
He has always made it about him.
He still is very self centered as he looks at life from his perspective of pain and of having this disease.
I get that. But it's time to step out of yourself if you truly want to make peace with your life and with your wife.
It's time.
Tonight's question:
"You don't feel loved, wanted or protected by me do you?"
I can't always deal with these questions when I first walk in the door. My focus is on greeting the dogs, getting changed, greeting him with a kiss, emptying urinals, and feeding the animals. Then, it's walking the animals and starting in on dinner. Answering a question he has pondered and fretted on all day deserves more than a quick, flippant answer in the midst of my daily, singly focused tasks.
We were going to an MS Support Group that night so I told him to ask me again on the ride over.
Of course, my busyness did not allow me to think on the question anymore and he hit me with it again as soon as the car hit reverse on the way out of the driveway.
And so, I paused and dragged out my words as I carefully considered how I would answer this delicate question.
MS has robbed my spouse of a lot of the things he took pride in: his physique, his stature, his athletic ability. And now he is questioning his value to me. He is having a hard time understanding that I just love him
for him.
I don't always understand it either. Perhaps, it is spiritual in nature, something beyond me and above me. Something that just can't be explained.
I used to say I loved him for his inner strength, only to find out it was all bravado masking insecurity.
He certainly has not been an easy person to love. He was a hot head given to outbursts of anger. He was critical and controlling and not given easy to laughter. He was hard on the kids on things that didn't really matter and he didn't keep his promises. He often made me cry and hurt me deeply. He was terribly jealous and never truly trusted me. He never seemed truly apologetic. In fact, I always had to tell him all he had to was apologize
and so
he would just.... say the words.
I forgave him every time
anyway.
I tried to keep it from happening. But there was wedge of resentment that was constantly trying to grow between us.
So, as he has all this time to think and he reflects on our life together, these questions arise.
As he feels unlovable and unworthy, he wonders why I have stayed.
He wonders what role does he play now as more and more of his abilities are taken away.
His questions are justified but I can't answer it the way he needs.
I have determined to be honest with him. I have not white washed the hurt he has caused me over the years. I have not held back the truth as I have experienced it. It has not been easy for him to hear and I hurt for him
but he needs to know.
Maybe I'm wrong.
But part of me feels this is my time.
He has always made it about him.
He still is very self centered as he looks at life from his perspective of pain and of having this disease.
I get that. But it's time to step out of yourself if you truly want to make peace with your life and with your wife.
It's time.
Faith beyond a Monkey's Paw
March 8, 2016
I'm tired today.
My spouse seems tired everyday. Tired of the pain. Tired of having MS. Tired of the time he spends thinking about having MS. Tired of a life that does not offer him a whole lot of promise for the future.
But, do you know what? I'm tired of hearing about it.
"You have the damn disease now accept it and make the best of it."
Sounds cold.
He tells me I'd be the same way.
I don't think so.
I've taken what life has thrown at me and sought to see the positive. What choice do I have?
Life has not been what I have wanted it to be either, but there are bright spots. There is always hope. In fact, I just read from this little insert that came with our bulletin on Sunday. It was about marriage relationships but it can be applied to many things.
"When you have a chance to doubt or trust, you trust.
When you have a chance to give up or hope, you hope.
When you have a chance to quit or persevere, you persevere."
Seems like the better option to me.
But I don't live with perpetual pain and I don't have MS. I'm just the lucky recipient who lives with and is married to the guy who does.
I didn't say love, did I?
Well, I love him too, of course I do. It's not an easy love but it's not conditional either. It is definitely a bears all things , believes all things, endures all things kind of love. It has not been fairy tales and rainbows that is for sure. He has not been an easy man to love but I do.
More than anything I am disappointed and saddened by the love I have gotten in return
or haven't gotten from him.
And yet, I know he loves me, he just doesn't know how to show me in a way that makes feel ... adored.
As I told him, I'm living on a shoe string budget, maybe it's less than that
maybe it's an uncooked spaghetti noodle budget.
heavy sigh~
Part of me does long for more. Part of me fantasizes for it during little snippets of time in my imagination. I wonder if a life of really being loved and taken care of will ever be in my future?
I dream...
but I doubt
because then I think of the many who have wished for things only to get a monkey's paw result.
(Anyone who ever watched Gene London growing up may understand the reference.)
-The monkey's paw was a talisman of sorts that was used to make a wish. The wish would be granted but there was always some kind of tragedy involved in the process, a punishment of sorts, I guess, for trying to rewrite fate or trying to change the natural course of the events of life.-
So I accept my fate. Because I can see how the difficulties in my life have made me a better person. I just wish my spouse would allow those things to help him as well.
Maybe he has/is.
Plants always grow underneath the soil first.
"After you have suffered for a little while, the God of all grace, who called you to His eternal glory in Christ, will Himself perfect, confirm, strengthen and establish you."
Waiting for that day.
For both of us.....
I'm tired today.
My spouse seems tired everyday. Tired of the pain. Tired of having MS. Tired of the time he spends thinking about having MS. Tired of a life that does not offer him a whole lot of promise for the future.
But, do you know what? I'm tired of hearing about it.
"You have the damn disease now accept it and make the best of it."
Sounds cold.
He tells me I'd be the same way.
I don't think so.
I've taken what life has thrown at me and sought to see the positive. What choice do I have?
Life has not been what I have wanted it to be either, but there are bright spots. There is always hope. In fact, I just read from this little insert that came with our bulletin on Sunday. It was about marriage relationships but it can be applied to many things.
"When you have a chance to doubt or trust, you trust.
When you have a chance to give up or hope, you hope.
When you have a chance to quit or persevere, you persevere."
Seems like the better option to me.
But I don't live with perpetual pain and I don't have MS. I'm just the lucky recipient who lives with and is married to the guy who does.
I didn't say love, did I?
Well, I love him too, of course I do. It's not an easy love but it's not conditional either. It is definitely a bears all things , believes all things, endures all things kind of love. It has not been fairy tales and rainbows that is for sure. He has not been an easy man to love but I do.
More than anything I am disappointed and saddened by the love I have gotten in return
or haven't gotten from him.
And yet, I know he loves me, he just doesn't know how to show me in a way that makes feel ... adored.
As I told him, I'm living on a shoe string budget, maybe it's less than that
maybe it's an uncooked spaghetti noodle budget.
heavy sigh~
Part of me does long for more. Part of me fantasizes for it during little snippets of time in my imagination. I wonder if a life of really being loved and taken care of will ever be in my future?
I dream...
but I doubt
because then I think of the many who have wished for things only to get a monkey's paw result.
(Anyone who ever watched Gene London growing up may understand the reference.)
-The monkey's paw was a talisman of sorts that was used to make a wish. The wish would be granted but there was always some kind of tragedy involved in the process, a punishment of sorts, I guess, for trying to rewrite fate or trying to change the natural course of the events of life.-
So I accept my fate. Because I can see how the difficulties in my life have made me a better person. I just wish my spouse would allow those things to help him as well.
Maybe he has/is.
Plants always grow underneath the soil first.
"After you have suffered for a little while, the God of all grace, who called you to His eternal glory in Christ, will Himself perfect, confirm, strengthen and establish you."
Waiting for that day.
For both of us.....
To sink or swim?
March 14th, 2016
"Don't make fun of me."
It wasn't pretty. In fact it was downright pathetic. But I guess that is what a man yells when he has been tortured all day, is already worrying about what tomorrow will bring and is scared because the pain is extending beyond his feet into his buttocks. What do I know? I'm not a pain expert. Not an MS expert. And not an expert to someone who may be depressed or who has other deep-seated issues.
He yelled this at me after I told him he was being dramatic because he yelled he needed help going to the bathroom right now. But maybe it's not being dramatic considering the above. And, "no" I don't know how I would be if it were me but still... there just seems to be something more going on. He shook his walker, wanted to throw it, yelled at me and told me he didn't want my help now. And then told me he'd poop on the sofa. I mean, really? I walk in the door after being gone an hour and this is how I'm greeted. I did mock him at one point because he was spitting and slobbering while he was yelling about how I needed to get out there now. And I shouldn't have done that but it was quite the scene and I wanted to give him some perspective. ( I was there to help, he can relax and we'll get you to the bathroom) but instead it stirred up this carnal response of madness. Just seems a little "off" to me.
This is beyond me.
-I can do it. Just not in my own strength.-
But really?
It's the psychological stuff I am not equipped to handle. I don't want to make things worse. And I think my pull-up-your-boot straps mentality is not always what he needs.
To be honest, I don't know what he needs.
On the other hand, I know what I don't need, people feeling sorry for me.
I mean I'm glad that they empathize with my struggles because so often the caregiver is forgotten.
But don't feel sorry for me. I don't have time, patience or room in my life for a pity party. That does not help me one iota. I have been given everything I need to handle my unique circumstance.
He may be drowning. But I am not going to be pulled underwater in the process of trying to help.
So I guess I kick him now and then.
I don't like it.
But it's survival.
This is all very emotionally draining stuff and until you experience it you can't imagine.
Do you turn cold-hearted in the process? Maybe. But it was never supposed to be that way. You are there to help not kick. But.....
well....
there you go....
I kick a man when he is down.
and I'm ok with that.
What does that make me?
Am I becoming a better person for going through this or an uglier person?
I don't know any more?
"Don't make fun of me."
It wasn't pretty. In fact it was downright pathetic. But I guess that is what a man yells when he has been tortured all day, is already worrying about what tomorrow will bring and is scared because the pain is extending beyond his feet into his buttocks. What do I know? I'm not a pain expert. Not an MS expert. And not an expert to someone who may be depressed or who has other deep-seated issues.
He yelled this at me after I told him he was being dramatic because he yelled he needed help going to the bathroom right now. But maybe it's not being dramatic considering the above. And, "no" I don't know how I would be if it were me but still... there just seems to be something more going on. He shook his walker, wanted to throw it, yelled at me and told me he didn't want my help now. And then told me he'd poop on the sofa. I mean, really? I walk in the door after being gone an hour and this is how I'm greeted. I did mock him at one point because he was spitting and slobbering while he was yelling about how I needed to get out there now. And I shouldn't have done that but it was quite the scene and I wanted to give him some perspective. ( I was there to help, he can relax and we'll get you to the bathroom) but instead it stirred up this carnal response of madness. Just seems a little "off" to me.
This is beyond me.
-I can do it. Just not in my own strength.-
But really?
It's the psychological stuff I am not equipped to handle. I don't want to make things worse. And I think my pull-up-your-boot straps mentality is not always what he needs.
To be honest, I don't know what he needs.
On the other hand, I know what I don't need, people feeling sorry for me.
I mean I'm glad that they empathize with my struggles because so often the caregiver is forgotten.
But don't feel sorry for me. I don't have time, patience or room in my life for a pity party. That does not help me one iota. I have been given everything I need to handle my unique circumstance.
" I can do all things through Christ who strengthens me."
What bother me is that my husband has been given all the tools he needs to persevere as well and instead of tapping into that he grabs onto me like he's drowning and I'm the rescue swimmer trying to save him. He'll keep clawing, pulling and holding onto me trying to stay afloat but in the process taking me down with him. As with any rescue swimmer, you are taught to kick them away and try to keep them from climbing on top of you. He may be drowning. But I am not going to be pulled underwater in the process of trying to help.
So I guess I kick him now and then.
I don't like it.
But it's survival.
This is all very emotionally draining stuff and until you experience it you can't imagine.
Do you turn cold-hearted in the process? Maybe. But it was never supposed to be that way. You are there to help not kick. But.....
well....
there you go....
I kick a man when he is down.
and I'm ok with that.
What does that make me?
Am I becoming a better person for going through this or an uglier person?
I don't know any more?
Thursday, April 7, 2016
Talking it Out
3-1-2016
Everyday is a day of grieving.
I don't mean that in a depressing way but in a way of that makes peace with my/our circumstance.
In general, I'm glad I'm an optimistic person that doesn't waste a lot of time worrying about things I have no control. But, at the same time, I have to be honest with myself, MS is slowly robbing my husband of hope, joy, ability, purpose, usefulness. This in turn, affects me.
Hi, my name is.... unimportant. I represent the many voices of those who are currently living to take care of someone else. I can't speak for all those voices but I can share the reality of my situation.
In 1994, my spouse was diagnosed with MS, an auto immune disorder that affects the brain, nervous system and the spinal column. There is no cure and MS seems to affect everybody a little differently. Time is not on your side. The longer you have it, the more likely you will continue to decline.
In the beginning, my spouse had only nominal symptoms: dizziness, numbness in fingers and toes, tired for no reason but as the years progressed, 21 years later, he is suffering. I've used that word because...he is suffering....mentally, physically, spiritually, emotionally. He is in pain daily. He struggles daily. He's been humiliated. He has agonized. He has questioned. He wonders why? He doesn't look forward to the rising or the setting of the sun because each day is just more of the same: pain, aggravation, frustration, humility. I can't imagine and yet I am cold to it at times. Perhaps it is my self defense mechanism. Perhaps, I think he is reaping what he has sown. Perhaps, I think life is teaching him what he could not learn anyway else. Perhaps...but I don't know. We look for answers. We look for relief. We look for escape. We look to a future that may be as bleak as the present we are experiencing.
This is the life of a caregiver. Able to care, able to meet needs the person they help can't take care of themselves but torn because we're so aware of what life could be like without them. Eyes closed, freedom is ever fleeting, knowing with eyes open reality is staring back. Your loyalty, love, commitment, faith all keep you bound to a life of service but....the greener grass always beckons.
I laugh. I smile. I can still do those things but there is an awareness that the effort it takes for my spouse to do those things is never wholly genuine. The pain has robbed him of this. But he has never been like a spent dandelion blossom blowing freely in the wind but rather like an aged oak tree stationed in one place for many years. He worries, he thinks, he stresses. Perhaps this is why this disease developed in him. Another reason not to worry, it can make you sick. Sick with worry, a phrase that takes on new meaning.
Anyway I hope for this blog to be as an encouragement to others. You're not alone. You can still laugh. Faith will carry you far, whatever.
But the bottom line is I'm doing this for me, to bleed myself like a leach by writing and feeling the ugliness, selfishness being pulled out of me until I can accept my fate and be at peace with this life I've been given and become a more beautiful person in the process.
Everyday is a day of grieving.
I don't mean that in a depressing way but in a way of that makes peace with my/our circumstance.
In general, I'm glad I'm an optimistic person that doesn't waste a lot of time worrying about things I have no control. But, at the same time, I have to be honest with myself, MS is slowly robbing my husband of hope, joy, ability, purpose, usefulness. This in turn, affects me.
Hi, my name is.... unimportant. I represent the many voices of those who are currently living to take care of someone else. I can't speak for all those voices but I can share the reality of my situation.
In 1994, my spouse was diagnosed with MS, an auto immune disorder that affects the brain, nervous system and the spinal column. There is no cure and MS seems to affect everybody a little differently. Time is not on your side. The longer you have it, the more likely you will continue to decline.
In the beginning, my spouse had only nominal symptoms: dizziness, numbness in fingers and toes, tired for no reason but as the years progressed, 21 years later, he is suffering. I've used that word because...he is suffering....mentally, physically, spiritually, emotionally. He is in pain daily. He struggles daily. He's been humiliated. He has agonized. He has questioned. He wonders why? He doesn't look forward to the rising or the setting of the sun because each day is just more of the same: pain, aggravation, frustration, humility. I can't imagine and yet I am cold to it at times. Perhaps it is my self defense mechanism. Perhaps, I think he is reaping what he has sown. Perhaps, I think life is teaching him what he could not learn anyway else. Perhaps...but I don't know. We look for answers. We look for relief. We look for escape. We look to a future that may be as bleak as the present we are experiencing.
This is the life of a caregiver. Able to care, able to meet needs the person they help can't take care of themselves but torn because we're so aware of what life could be like without them. Eyes closed, freedom is ever fleeting, knowing with eyes open reality is staring back. Your loyalty, love, commitment, faith all keep you bound to a life of service but....the greener grass always beckons.
I laugh. I smile. I can still do those things but there is an awareness that the effort it takes for my spouse to do those things is never wholly genuine. The pain has robbed him of this. But he has never been like a spent dandelion blossom blowing freely in the wind but rather like an aged oak tree stationed in one place for many years. He worries, he thinks, he stresses. Perhaps this is why this disease developed in him. Another reason not to worry, it can make you sick. Sick with worry, a phrase that takes on new meaning.
Anyway I hope for this blog to be as an encouragement to others. You're not alone. You can still laugh. Faith will carry you far, whatever.
But the bottom line is I'm doing this for me, to bleed myself like a leach by writing and feeling the ugliness, selfishness being pulled out of me until I can accept my fate and be at peace with this life I've been given and become a more beautiful person in the process.
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