Friday, October 24, 2014

Shouldn't it get better? "I want to go home."

I know the disease, this Lewy Body Dementia will not get better. I was thinking after Army life things would get better.

As my husband's disease rapidly progresses I am finding there is no real help for him or for me.

He doesn't get out of bed now. That makes it very hard to get him to the doctor for any appointments. The VA responded to that as "It's his right to reject medical care." This after a social worker had been here to evaluate him for Primary Care Home. When I called back two weeks later the nurse I spoke to said he had been denied because he is able to care for himself and can make the appointments. I wonder how they came to that conclusion? Oh, and Caregivers Assistance through the VA? They found a way to deny that. They didn't take into consideration his PTSD and depression diagnosis but based it on dementia. Therefore it's an illness and not an injury and no eligibility.

This gets more and more ridiculous with each passing day. The nights are getting longer and my sleep is getting less and less.

I don't have someone to come in and help me with the mountains of paperwork that I am working on. Paperwork that if it doesn't get done will leave us homeless in no time at all. Paperwork that even after it's completed will take months for the agencies to act on. The answer to all? Hire a lawyer. Well that seems logical. Except lawyers like to be paid and there is no money for that. Pro bono attorneys I don't believe actually exist.

I have reached out to many different veteran help organizations. Each one seems to have a way to disqualify us for help for one reason or another. It angers me and makes me wonder what they do with all the money they fund raise for. Is it only used to advertise their organization and raise more money? Is it because he will die soon so it really doesn't matter anyway?

I am not behind on bills yet. If something doesn't give soon I will be. I'm doing everything within my own powers to not let that happen because I am desperately trying to buy a house in Florida to give Mikey his last wish of "going home." I can't afford to get behind on anything because then the credit report/score is affected and there go all hopes for getting a house.

He doesn't know all that I do during the day to hold things together. The mountains of paperwork, the phone calls. I exhaust myself each and every day trying to figure it out. There are a couple of evil forces that are against him and every time I make progress those forces make sure nothing good can happen.

This man that gave so much of himself when he was healthy is now nothing to society. Yesterday at a visit to the emergency room he was treated like nothing more than an animal and hospital staff untrained in dealing with dementia patients calling security and the local police only because he was wandering the hallways. He was trying to escape those hallways but he couldn't and he wasn't harming anyone, being loud or disturbing anyone. The entire ordeal was horrifying for me and beyond stressful for him when it didn't need to be. At least I know I will never take him back to that hospital!

I am his caregiver. There is no break. There is no help. He loses more and more functioning everyday. The more he loses the more I have to do. He has lost all will to live. I try to fight for both of us. I tell him everyday he has to keep fighting. He has to fight so I can get him home. Lately, each time I tell him to fight so he can get home I wonder if I am just lying to him because I don't see anyway of making that happen with the way things are right now.

He'll sing the chorus to "Home" over and over again. It breaks my heart. This is his favorite version.

I've learned that caregivers really get no help. I have heard that respite care from the VA is nearly impossible because of long wait lists. I also know when a caregiver needs respite it's usually urgent. I've learned people feel bad for caregivers but mostly they only use words and no actions. Please don't say "If there's anything I can ever do..." and then not back it up. Better yet. Never say that. Caregivers don't generally ask for help for the things they really need help with.

If you know a caregiver, DO something. It doesn't have to be big. Just do something that will make their life easier. Take them a meal. Run and errand. Many things get left undone because they cannot get away to do them. Caregivers don't want to be a burden and need help way more often than they will ever ask for it.

I can tell you from my standpoint as a caregiver. The world has never been a lonelier or more scary place to live in. I sit here alone watching my husband decline daily. I grieve daily for the husband I have already lost yet I watch each day as his physical body deteriorates. This is not a happy world I live in.

Monday, October 13, 2014

Don't Hold Your Sneezes!

Story told with permission. This is part of the "Stupid Mikey Stories" that I hope to capture as many as possible of the thousand silly stories he has while he can still tell them to me.

Really. Do NOT try to hold in your sneezes. I've done it my entire life. But I cover my entire face to ensure the safety of others around me. I have learned the art of plugging my nose and covering my mouth. I've spent almost 50 years perfecting the technique. But not everyone can manage it.

My husband is one that hasn't mastered the art of the inward sneeze.

Of course we all do what we can to prevent a public sneeze. Look at a bright light, put your finger under your nose, pinch your nose, put your head down, bite your lip or any other method you might have heard works. By the way, these work about as well as hiccough remedies.

Sometimes when your body needs to sneeze it's going to sneeze regardless of how YOU feel about it.

It doesn't care that you are standing in line making polite conversation with a Captain that is also going through medical out-processing. The line is long and people have been waiting for hours long before the door is opened because it's the only way to actually accomplish this task.

*Disclaimer* Don't use tobacco! It's addictive and bad for your health! 

It's also not polite for tobacco users to be lighting up a cigarette and polluting the air of those around them with the second hand smoke. So don't do it! (That is coming from a smoker that respects the air of non-smokers.) However, there is no harm for those that chew tobacco to get their nicotine intake by putting in a dip. (If you aren't spitting disgusting tobacco juice in the paths of other people. Keep it clean and I don't care if you chew.) I was fueling my habits with a cup of coffee in one hand and an electronic cigarette in my pocket.

Anyway, sneezes happen. Many times you can feel them coming on. Sometimes they surprise you. Sometimes both. As Mikey desperately tried to hold back his sneeze his inner workings said, "No way buddy! You are GOING to SNEEZE!"

And he did.

Suddenly and with great force.

While he was chewing snuff. (Very small particles of tobacco.)

While he was talking to the nice Captain.

Who was now wearing Mikey's snuff all over his ACU's.

Mikey could have crawled into a hole and hid forever. He was profusely apologizing. I was just as embarrassed for him.

The Captain calmly looks at him and says, "It's okay. I have children."

Now THAT was funny! What a great guy to take it with grace. It could not have been pleasant. I know it wasn't, not for any of us.

And now for some funny cuteness.

Thursday, October 9, 2014

What Outside Doctors Saw

"SM is intelligent, prideful, and with a good sense of humor which works both for him and against him. These attributes allow him to provide a fa├žade which makes him appear normal to the untrained, unknowing. In reality he is struggling with his day to day adapting and compensating as he slowly decompensates emotionally and cognitively." *note: SM means service member*

Those are words written by a doctor that he was sent to at Brooke Army Medical Center. I don't know exactly what title she held but it was one of the main doctors at Fort Sam Houston's Warrior Transition Unit.

That was July 18th. He spent 4 hours total being evaluated by this doctor and another at Occupational Therapy. They did tests on him. Spent time with him. Watched him. They didn't do anything devious or try to trick him in any way. You don't have to. All you have to do is spend time with him. Something that doctors and command at Fort Hood were not willing or behaved as if they had no time to do. How does a soldier spend a year in a company and they still cannot see what a doctor that spent 2 hours with him saw?

Because they did not WANT to see. It is as simple as that.

His SCAADL was approved as of July 18, 2014. He retired July 27, 2014 and is only entitled to that for 90 days beyond his active duty service. It all just appeared to be a game the Fort Hood WTU played with him. Had I not fought he would have gotten nothing.

I have been told that policy changes have since been implemented to protect the soldiers that are coming behind him. No one has yet to tell me what those changes are. No one has offered to right the wrongs they caused us.

I requested a congressional hearing on the matter. I am still waiting on that.

I heard there is going to be some SCAADL training here at Fort Hood from the Commander of SRMC (Southern Regional Medical Command) on October 16. I have not been officially told nor have I been invited to attend. That disappoints me. I want to make sure that positive changes are truly taking place and that the training is not just something to get the Inspector General off their backs from complaints I filed with them or to sound good at a Congressional hearing.

I know there are people involved that care. There are just too many others that don't. It's a classic fight against good and evil.

There is a solution. It really isn't that difficult, or at least it doesn't seem that difficult to me. Don't put non-medical people in charge of what is really a rehab setting for sick and wounded soldiers. Use medically trained soldiers, doctors, nurses. At least use a higher percentage than non-medical people.

I'm tired. My thoughts are scattered. Mikey entered the hospice program this week. They are angels. They care. I feel like for the first time in almost 3 years I can back away and trust that someone else will take care of him as well and better than I have. I could never give that trust to anyone while he was still in the Army. They never once tried to earn my trust so they didn't get it.

Monday, October 6, 2014

Imagine for a moment....

Imagine for a moment.....

I see things differently now that I'm an Army wife. I've never been one to like extreme temperatures. I like a nice 60-70 degree F. outside. Anything else I tend to complain about. But it's different now. I'm not saying I still don't complain, I just try to be careful about where I am and who the recipient of my complaint is.

So for just a moment play along. Think of the hottest day of the year. For me in Texas that's around 110-115F. Now go to your stored winter clothes and pull out your warmest outfit and put it on. Don't forget a hat. Find a backpack laying around and fill it with 50-80 pounds of whatever you can find. 10-five pound bags of sugar would be great. Put the backpack on now. Now find a fan and get the gunk from your vacuum cleaner, you know the sand and dust that's in there. Rig it up by the oven so the gunk is blowing in your face. Before you turn the fan on turn on the oven to it's lowest setting and after it preheats turn it off and open the door. Now turn the fan on and and stand there for as long as you can. Bet it's not long. It's not quite realistic, perhaps it's not even close to what our soldiers endure everyday during the hot summer months in the middle east.

When my husband first reenlisted and was in Ft. Sill for a short while I went down to visit him. I don't think I EVER shut up about how hot it was and how miserable I felt. I did not realize how selfish and inconsiderate I was being. Or how very tolerant was my husband was being with me. On one particularly hot day we were walking out of a shoppette and I complained how hot it was. My husband in his gentle way stopped me and pointed out a truck. I'm not sure of what type but it has a canvas cover and rail seats in the back for transporting soldiers. The back of the truck was packed with soldiers, sitting, standing and squatting and more getting in.

Now I'm a little dense at times, especially when I am miserable. He asked me to notice what they were wearing. They were dressed in full battle gear. (The average Army trooper’s gear now approaches 125 pounds. Reference ) Then it occurred to me how completely, totally and miserably HOT they had to be. And not a single one was complaining or fanning themselves. They just dealt with it.

Yes, I was a newbie. Yes, my eyes opened a great deal that day.

I had to go somewhere the other day and it was 102F outside. I grabbed a bottle of water to take with me. I ran into the place for 30 minutes and when I came back out my water could have been used for a cup of tea. It immediately made me wonder about soldiers in the field or on missions and how often they must drink warm water.

They sacrifice so much for us. When you hear of sweat and blood they give, it is no lie. I don't think unless you have been there, a soldier, in their shoes you can fully comprehend. I know I can't. It makes my heart swell with pride for every one of them while at the same time breaking for all they go through.

So this summer when you think about how hot it is, stop for a moment and think of soldier that doesn't get to escape to an air conditioned room when they want or get a cool drink of water when they want. They have to tough it out. Army Strong. And unless you have a bottle of ice water to hand to a soldier in uniform, never tell them how hot it is. Better yet, don't say anything, just offer them the ice water.

Beginning of sandstorm. From my husband, Tikrit 2010.

Soldier in heat and sandstorm.  No credits found.
Reposted from Over 40 Army Wife June 8, 2011. 

The Warrior Spouse

I have spent the last few years fighting for my husband to get the treatment and care that he deserves. I turned to many many organizations and people that said they were there to help. Sadly, most of the time I was let down. They would be sympathetic and caring yet know one gave advice on where to call or how to proceed.

I created The Warrior Spouse on Facebook as just a place someone can go to ask questions or find information. The page is for all caregivers, not just spouses. It is for active duty military and veterans. We just left the active duty side and I am now muddling my way through the VA side of things. It is a huge confusing world of paperwork and denials.

As Caregivers we get a heap of things piled on our plates and it gets overwhelming. Not being able to know the next steps make it even harder. I would like to see Caregivers come together to help each other. Do not wait for someone to do it for you. Actively seek out the next steps, even if you don't know what they are.

Together we can help each other and hopefully someday ease the burden for future caregivers. We may not know the answer but I bet someone can steer you in the right direction to get where you need to go.

If you, or someone you know is struggling with the systems please join us and spread the word.

Click the Like button to be added now.