Robin's Eccentricities

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…

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…

"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 façade 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 ti…

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 …

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 …