22 December 2013
To Whom It May Concern,
Let me introduce myself, and give you a little
insight as to what our lives entail in our household with a veteran that is
100% for PTSD and has Non-Epileptic Seizures. To tell you about today, I need
to tell you about the beginning. Richard and I married in January 2003. He was
a great Marine, and absolutely wonderful with my 5-year-old at the time. He
loved her like no other, you’d never know they didn’t share genetics. Around
the house he was helpful, took initiative, overall we had a very balanced home
where responsibilities were shared. He was loving, cared for his children, and
was overall a “dream” husband and father. Things changed. Let’s fast forward to
today’s time.
Let me start by saying my husband is not an invalid,
nor do I treat him as such. I expect him to participate in the household,
complete activities, and finish his responsibilities. Sadly, things don’t
always go as such now. I hate, and that is a pretty strong word, that I feel I
must do everything. I beg, I plead, for help. Richard has responsibilities that
are his to complete; washing dishes, taking out the trash, picking up the dog
messes, making sure the youngest two children are bathed nightly, putting the
laundry away, collecting the dirty laundry, and feeding his dogs. Those are his
absolute responsibilities, but he is also responsible for other things as well
to help around the house. Things like picking up the children’s toys,
occasionally sweeping, things to help keep the house in order. You would think
that is pretty easy, right? Not-so-much in this household. My husband sleeps
all the time. He “works” for 10 to 15 minutes and then is tired. It isn’t the
lack of sleep that exhausts him, it is the lack of motivation.
I am a positive constant in my husband’s life. I
work hard to keep him in a safe and secure place. I don’t babysit him, I
co-exist with him so he can have the most normal life he can. I encourage him
to get out and do things with the family, where his hypervigilance typically tries
to take control, and honestly, sometimes it succeeds. But that does not mean I
am going to lock my family away. We went down that path before, and I refuse to
do it again.
I volunteer with my children’s elementary school,
where Richard accompanies me. While doing what I need to do, Richard will do
miscellaneous things in the workroom that the teachers need completed, like
making copies or sharpening pencils. Sure they are not difficult or glamorous
tasks, but he accomplishes them without complaint, and feels good that he is
doing something that benefits his children. When it comes to the children, he
has a rather strained relationship with them. The relationship between my son
and he is nearly non-existent, and I feel like Richard is more a servant than a
father in my youngest child’s eyes. My son is barely 7 and has never known my
husband as “normal.” My 8-year-old daughter absolutely loves her Papa, and
wants the relationship with him to be his little Princess, but she feels like
he is mean so much of the time, and he lacks desire to be with her. The eldest,
who is now 16, use to have an idealistic relationship with Richard, and now
wants nothing to do with him. She is tired of the stress and the lack of help
that I receive from him. Occasionally I talk to my kids about how they feel,
and I have recorded it in the past. My children’s words are amazing. While they
don’t want to “talk bad about” their Papa, and tread lightly, they are
innocent, honest, and truly amazing kids. If you want to know about what goes
on in my household, talk to them. You will not get a more innocent and honest
answer than from them.
So let’s go back to the whole, “Richard needs to be
independent thing.” Outside of what I am doing, how shall I make this happen?
He can’t drive for six months since his last seizure, so I have to accompany
him everywhere. I don’t take care of his responsibilities, like washing the
dishes. They are his to accomplishments to complete. So now I wait days to
weeks for my dishes to be washed. I am lucky if the dog messes get picked up
once a month, which I have to ask for it to be done, since I allow him time to
“think of it” on his own.
It’s true, I don’t like Richard using the stove or
oven while I am not here, or my eldest, but that is because he forgets and
allows things to cook for hours on end. That is a danger not only to him, but
us as well.
Richard’s medication does not help nearly as well as
we would like it to. He gets frustrated rather easily and must be monitored to
keep him appropriate with his behavior. His anxiety must be monitored as well.
Unfortunately, the seizures he experiences can be harmful for him, and he has
split his head on multiple occasions. Over the past few years I have worked
with him to recognize when “something doesn’t feel right” and encourage him to
sit down so that the least amount of damage is physically done to him. Many
times I recognize that he is acting “off”, and encourage him to lay down.
Am I his mother? No. Am I his babysitter? No. Do I
treat him like a man? Yes! Will I treat him like a child? No! Do I continue to
care for him as well as try to give my children the best childhood they can,
given the circumstances? Absolutely! I run myself ragged to accomplish all the
things that should and need to be accomplished. Do I deny myself sleep to
accomplish these things? Yes, I do, and I know that I do. My husband, my
children, they deserve the best. I have yet to meet someone who is willing to
do what I do and for Richard.
My husband deployed to Iraq. But let’s be honest.
What happened in Iraq, well, it didn’t stay in Iraq. And the battlefield was
brought home to be fought on United States soil, and in my home. My husband
can’t go out by himself. Yes, I’m sure you can say that this is also my choice.
And I am most comfortable with him being away from me when he is with others
that know him, and “get it.” But I love my husband and I want him alive. I
don’t like coming home to find the sheriffs pointing their firearms at my
husband because he is in a dissociative episode and doesn’t know where he is. I
am sure that my husband could seriously hurt me when while having his episodes,
but I keep my distance and try with all I have for him to come too on his own.
I talk loving to him and make him feel safe. Do I handle it with grace? I sure
think so. I handle each situation so calmly that people think I should be
“freaking out.” I’ve been doing this since 2006, I’m good now. Thanks though. I
have kids. I need to stay calm and collected. I feel that because of my
calmness that the severity of the situation is not viewed as intense or extreme
as it may be. But handling it any other way would only add fuel to the fire,
and could increase the possibility that my husband could be hurt, or hurt
someone.
So in what ways do I enable my husband? Let’s
clarify, I do it for his safety. I don’t allow him to drive. Silly me to not
want to put anyone in harm’s way. I ask him not to use the stove or oven while
I am not here. I appreciate my family and our home. He can microwave left overs
all he wants. I remind him to take his medication for their specific times.
None of us are very fond of non-medicated Richard. And I control the finances.
Why do I do that? I do it because he has issues with handling money. The VA
declared him “incompetent for VA purposes” and designated me as his fiduciary.
I didn’t request it. And honestly, it upset me when I found out at first, until
I learned more about what it means. Do I hope someday that he will be able to
manage money a little better? You bet! But with his memory the way it is, and
his inability to remember things, I am not handing him all the money for the
bills and hope that he pays everything correctly. This takes time, and isn’t
going to happen tomorrow. It’s called baby steps. When you give some people too
many things to do at once, it is brain overload, and frustration is likely to
take over. Once that new thing is mastered, we add something new. It is a
growing process. We all want the same thing, right? For him to grow and allow
him to achieve his successes? If not, perhaps wanting to set him up for failure
is your preferred choice. And should that happen, at your hands, it would be on
you that my husband possibly meet his ultimate demise. And I will tell you
what, I will NOT allow that to happen. He is my love, my life.
So what is with the tone of this letter? It is more
like a letter to a friend then highly respected professionals. I’ve tried the
formal letter, several times. And my words that are written are used against
me, and misconstrued. Instead of getting clarification to what they may
question or not understand, the information is interpreted as to how they feel
fit. I expect professionals to act like professionals, and not and not silently
“poke at my husband with a stick.” The actions at the Michael E. DeBakey VAMC
have increased my husband’s anxiety and his depression. How is he to feel cared
for by people when they do not document what they are told, whether by him or
myself? His memory is awful, mine is awesome. I remember details, and I even
logged them as I can to show you. But you don’t care enough to even look at it,
let alone document it.
So I am at a loss at this point. I don’t know what I
did to upset or hurt anyone there. I want my husband viewed fairly. He is not
just his last four and the first two letters of his last name. He is a person.
One that is hurting. One that wants to be better. One who wants to be treated
and cared for medically. We are so much more than the words and
mis-interpretations on a piece of paper. We are more than the nightmares that
cause the thrashing in his sleep. We are more than the hypervigilance
everywhere we go. We are more than the jumps at loud noises. I realized that
when he came home, that the war would come too. But I didn’t know was that I would
have to continue the battle, just not on foreign territory, but on Veteran’s
Affairs property.
No one should have to go through this, like this.
With no one talking to us, we feel more and more explanation is required. All
we want is time to talk, and to be listened to. And we actually want what you
are told to be documented, so when others look through the medical files, they
recognize that these issues have been around for years, and I’m not “making it
up” as we go.
I will continue to stand by my husband and fight for
him. Would you want any less if it were you?
I refuse to be just the wife, just the mama.
Natasha Massimino
