Sunday, April 13, 2014

Alleviate Congestion With This Simple Meal


I get colds too much. I have my entire life. Not simple colds like normal people get. Mine start out easy then quickly become an infection. Sinus, bronchitis, pneumonia. Yuck! 

It's pretty miserable. I don't get sick as often as I used to but when I do there is one simple recipe that can clear you up, even if just for a short time.

Whenever we got a sniffle as kids we would get this for dinner. We never complained because we actually liked it. It was simple and effective and easy on our tummies. 

I'll tell you why it works after the recipe.

Ready?

Here it is.

Cook some elbow macaroni until tender.
Drain.
Add some milk.
Salt to taste.
Black Pepper. As much as you can handle.

The key ingredient is pepper. I'm a wimp and can't take much. The more the better so I use just a bit more than I can handle. I'm congested so it's easier to handle.

After the first few bites you will notice your congestion starting to loosen up. (You might not want to eat around others. You will also need a box of tissues handy.) 

I'm a milk addict but milk is actually bad when you are full of mucous. It generates more. That sucks for me because I simply will not give up milk. If you are willing to forego milk there are simple alternatives.

Use chicken or beef broth instead. Too easy.

Want to give it a little extra healing kick? Add just a touch of cayenne. I don't. Cayenne is far too hot for me but it's effectiveness can't be denied.

Why does this work? Piperine. 

You can actually buy commercially produced Piperine but it seems silly when it's so easy to just sprinkle some extra pepper on your food. 

For the really hardy or brave, simply chew on a couple of peppercorns. 

There are many health benefits of black pepper and someday soon I'll try to share more with you. Until then, just use more pepper. 

Thursday, April 10, 2014

Caregivers get sick too.

Monday my husband had oral surgery. That morning I woke up with a scratchy throat.

His surgery went well and he was put on 5 days of quarters. (Sick leave.)

I will honestly admit I was concerned about his reaction to anesthesia and the fact he had never been put under before. They used propofal and he doesn't even remember going to sleep. That's good. I just didn't know the residual effects of anesthesia on his dementia. Click here to see why.

What "normal" people do at this point is go home and rest and take Percocet that the doctor prescribed for pain. Yep. My husband's not normal. He didn't relax or lay down or go to bed. He didn't take his pain medicine. For 55 hours after surgery!

By Monday night I knew I was getting sick. I just didn't know what kind of sick or to what degree. I went back in my mind and remember someone sneezing a few days earlier because I said "Bless you." Just about the perfect incubation period.

I tried and tried to convince my honey to go to bed. I was not nagging at him. I would encourage him every few hours to get some rest. All that did was aggravate him. I dozed on and off taking cold medicine when I could no longer stand it.

At 48 hours in I told his nurse case manager during a check in that he had not been to sleep. She asked to talk to him. He tells her he's fine and he's just tired of me bitching about it. (That sentence comes into play soon.)

Later the squad leader stopped and it distracted him enough for long enough that he finally went to bed. He read the pain reliever bottle and it said take up to 2 Percocet.

Let me tell you this, he is extremely sensitive to any medication especially narcotics! He fell asleep sitting up and I finally convinced him to lay down although at the time he wasn't happy. I'm sure his neck thanks me today. I was so glad I could now take as much cold medicine as I needed and sleep soundly. He slept 14 hours straight.

The dogs woke me up at 5am. They knew he was awake. I went in there and at some point during the night he had fallen. He had a nasty red mark on his left cheek. I thought at first it was an infection but it was more of a blister from probably a carpet burn.

But he slept, and slept hard. He woke up feeling much better and so did I.

The plans for the day was to complete his leave packet which required seeing the social worker and getting her signature. He had an appointment at 3pm but the squad leader wanted it done earlier. No one could reach the social worker so we decided to try around noon. I took off at 10am to get urgent errands done that should have been done days before but I was too sick to do. I finished the first errand and my phone started to ring. It was the squad leader asking if I was tracking an 11am appointment with the Battalion and Company Commander. No I was not tracking that. I rush home and get my husband and head to the Company.

The GREAT news! Leave is approved. Hooray! We are not going anywhere but we have family coming for the Easter holiday. They are still going to do face to face checks everyday he is on leave but at least we don't have to do anything else. Compromise. We'll take it.

Then the Battalion Commander wants to know what happened to his face. He tries to explain about his sleep disorder. The Commander said no, "What happened?" We both told him there is no way to tell. That this is not unusual and has been going on for two years. He then said he heard I was having a hard time taking care of him and should we put him in the barracks. Um, NO. I didn't say no emphatically but said I was fine and wouldn't consider not taking care of him. He went on to say that he heard I was having a hard time "this week" taking care of him. I said he didn't sleep for 55 hours after surgery and I was sick, yes it was hard but I am fine.

I was dumbfounded that they would even think that. I played everything in my mind. Then it dawned on me that it was my husband's comment about "bitching at him" that the nurse case manager took as a sign I was having a hard time. Ah ha! A language barrier. My husband was joking and she didn't know that. I suppose not everyone gets his sense of humor. I remember when he first got there that he playfully said to me in front of the squad leader "I'm going to beat you like a redheaded stepchild." I knew he was playing and I could hear it in his voice. The squad leader almost snapped his neck to see my reaction, which was a smile and telling him he was silly.

I told him later he shouldn't say things like that because these people don't know him and they might take him serious.

And........they do. Sadly he doesn't necessarily contain the filter to determine that anymore because of his dementia. I hope they can see it soon.

Next week we are going to meet with the Brigade Commander for a follow up. Yes, while he is on leave and we agreed to that because we want things moving forward. I'm looking forward to the meeting.




Monday, April 7, 2014

More Reprisal?


On April 1, 2014 my husband received his monthly counseling. It was a positive counseling. No missed appointments. Right place, right time, right uniform, etc. All true and I work very hard to ensure it stays that way.

On April 2, 2014 I walked into the office where Mikey was and he was receiving and amended negative counseling! I read the counseling and it stated that he was being counseled for a "myriad" of issues. His leave was revoked, his profile was revoked and he refused to attend a treatment that was recommended. The next line said that was not an option.

Did you catch that? "A treatment was recommended." "It was not an option." Beyond the fact of those contradicting sentences my husband never refused treatment. He put himself into treatment a long time ago. He had a plan. He continues to follow that plan. The treatment he didn't want to go to was a 12 Step program that is religious based. We went to the IOP (Intensive outpatient) program and spoke to three different people including the clinical director. She told us he was not a good fit because of all of his medical appointments and not being able to attend groups. She said he was welcome to attend at any time any part of the program he wanted to or could attend.

Let me add that I have never seen an order from anyone telling him it was Command Directed that he attend anything.

That counseling also contains proof that his profile was revoked. Proof that his Chain of Command is going against a Doctor's recommendation.

He is already bogged down and overwhelmed with all the appointments he currently has. Both medical and psychological.

ASAP Counselor (Army Substance Abuse Program) - weekly
ASAP Doctor - monthly
Off post Counselor - weekly
SMART Recovery meetings 1 time week
PCP - WTU (Primary care physician) 1 time month or more
NCM - WTU - 2 times a week (nurse case manager)
Social Worker - WTU weekly
Neurologist and tons of tests - too many trying to find answers that are impossible to find
Psychiatrist - monthly
Dentist (some pretty extensive dental work being done) - too many

Do you see how he might have this whole substance abuse issue covered about as well as (actually better than) anyone?

He didn't choose to have the issue and has worked hard to overcome substance abuse. The Army needs to stop focusing on it and focus on his health issues that caused substance use to become a problem.

On the back of the counseling statement there are boxes that a Soldier can agree or disagree with the statement. He checked disagree and wrote what I said above about PHP and IOP.

When called into the Battalion Commanders Friday April 4th to discuss it even he had to admit the wording was bad.

It was also this meeting that the Battalion Commander told us to put in a new leave packet so my husband could get a break and visit with family. It's not approved yet. I'm hoping to finish the packet tomorrow to get it toward final approval.

Today, April 7th my husband had dental surgery. Fairly extensive and he was put under completely. The surgery went well. I took him to the Company to turn in his "quarters" slip. It is for 5 days. This surgery was approved over a month ago and had 5 days quarters listed on the preapproval request.

While there turning it in the Battalion Commander asked to talk to me. He asked again about IOP and someone said that my husband had indeed rejected the treatment. He asked if I disputed that. I said I absolutely did because I was there and know what was said. I told him again about speaking with the clinical director a lady that is on leave until the 22nd. He told me the director is a male. I said that may be true but the clinical director is a female. I even have her name and if I call to speak to the clinical director that is who I get connected to or told she is on leave.

After that he told me he had taken down all of the SMART Recovery material because he did not know if it was sanctioned. Really? An endorsement from both ASAP and IOP and he doesn't know if it's okay. This program is also used in the VA system. It's not something I started. It's something I had to be trained to do by a national non-profit organization.

I could tell I was losing my temper but simply said I have no issue with you taking down the SMART Recovery material as long as there is no 12 Step information available too. Keep in mind that any approved inpatient treatment the Army sends soldiers to is a 12 Step program and proven to be religious.

This is also where it comes into play that a soldier can fight for your constitutional rights but they can't have the same rights. That's another story in itself. But let me say before anyone tries to argue about 12 Step being a good program. It is for those it helps. But it will not help everyone. Just as one heart medication will not be effective for all people with heart problems. There are options and choices. This is not true in the Army for substance abuse. Yet.

About the time I felt I was really getting angry one of the Squad leaders told me my husband was bleeding all over. I excused myself from the Battalion commander and helped clean up my husband and took him home.

At around 4:30pm I got a call from the Squad Leader telling me that I would have to bring him in to see his PCP to have his quarters approved for all 5 days. I was incensed! I immediately questioned this because last time he had to get quarters approved it was because it was an off-post doctor. That if it were an Army doctor it wouldn't be an issue. I also said that I felt WTU was the biggest mistake I could have ever pushed my husband into doing. The protocols are ridiculous and NOT in the best interest of sick or wounded soldiers.

20 minutes later, just a few minutes after posting something similar to the above paragraph on Facebook I got another phone call telling me he did not have to see his PCP that he was good to go.

They need one story to stick to.

More on SMART Recovery:

Recognized for addiction and alcohol abuse Recognition

SMART Recovery is a recognized resource for substance abuse and addiction recovery by the American Academy of Family Physicians, the Center for Health Care Evaluation, The National Institute on Drug Abuse (NIDA), US Department of Health and Human Services, and the American Society of Addiction Medicine. You can get more information here!


Saturday, April 5, 2014

Dementia is Complicated, then add the Army



My husband's leaders appear to have this idea that someone with dementia should be sitting in a corner drooling and unable to speak. I actually hate the word dementia. It brings to mind a demented person that you would see in a 60's horror movie. I think the public in general has this misconception. Following are origins and definitions of dementia. I think the last part of the medical definition gets forgotten or ignored when thinking about a person with dementia.

Dementia Origin:
1800–10;  < Latin dēmentia  madness, equivalent to dēment-  out of one's mind (see dement) + -ia  noun suffix

Dementia definition from medical dictionary:
n.
 Deterioration of intellectual faculties, such as memory, concentration, and judgment, resulting from an organic disease or a disorder of the brain, and often accompanied by emotional disturbance and personality changes.

Once again, a person with dementia is not a psychopath or a person that has no ability to communicate to the world. Eventually they will lose their ability to communicate but they don't start out that way.

One more thing I want to address is what is known as "Cognitive Reserve."

It is much more complicated than what I can explain here but to keep it as simple as possible it explains how a person with dementia can appear "normal" to others that are not close to them.

My husband is a very intelligent person. He is also a bibliophile. He has more knowledge from reading in his little finger than I do in my entire body from years in college studying.

The knowledge that he gained throughout his life is still there. It will eventually be gone but for now he has it. That doesn't make his disease any less worse. He still can't retain what he sees, hears or learns today. His type of dementia also affects his behavior more than his memory.

It is this cognitive reserve that has caused us so many issues with the Army. His military career goes back to when he was 17 years old. That information is far back in his memories. He knows what to say, how to say it and when to say it.

This last week they had my husband take a VCAT test. Apparently that is an aptitude and interest test. I am not sure why but I suspect it was to say that there is nothing wrong with my husbands abilities. He scored very high in reading and editing. Not so well in math which was never his strong point anyway. That test really proves nothing other than my husband is still an intelligent human being. It does not mean he is still able to function and learn in a normal everyday living situation. It does not change the behavioral issues or the REM sleep behavior disorder. I will be anxiously waiting for someone to say something about his scores on this test. I would also love to have the ability to go back in time and see what his scores would have been like two years ago.

When one of  his Doctors told me about cognitive reserve I immediately had to research it.
Basically what I found was that having a high IQ does not stop or slow someone from getting dementia, it just makes it harder to notice. Once it is noticed the decline tends to be rapid.

Following are some snippets from research I have done:

The clinical diagnosis of dementia is not perfectly linked to levels of underlying neuropathology. The theory of cognitive reserve explains this phenomenon. People with high reserve go undiagnosed until damage is severe, then rapid decline ensues.

Cognitive reserve can be estimated clinically as it is effectively general cognitive ability and knowledge. The variables that are associated with cognitive reserve include: IQ, brain size, education, professional attainment, leisure activities, and familial history (of diagnosed dementia).

The presence of cognitive reserve implies that people with greater reserve who already are suffering neuropathological changes in the brain will not be picked up by standard clinical cognitive testing. Conversely anyone who has used these instruments clinically knows that they can yield false positives in people with very low reserve.

Reference:
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3044600/#!po=76.6667
http://www.ncbi.nlm.nih.gov/pubmed/10599762

Now, in fairness, there are people in his Command that are trying to learn about what this disease really is and how it works. Some are highly educated but as with most people, if you don't have a personal connection to dementia it is only a word.

Life has improved slightly this week. I want to have faith that they are trying to figure it out and that the right thing will be done.

Two things interfere with my faith though. I don't trust them and nice people (that weren't before) scare me.

Thursday, April 3, 2014

More shootings.

My heart is with those killed and wounded in the April 2 Fort Hood shootings. It is with all soldiers and families here. Shootings like this do not just affect those immediately involved. It affects the entire community in one way or another. 

When a person goes to work they never expect something like this and it can be hard to fathom that this is not the first time. 

Our soldiers across the county that are suffering from any type of mental health issue need better treatment. Not just medical treatment but fair treatment from those in Command. 

The shooter had a wife and young child that also remain in my thoughts today. Some families are planning funerals, some staying near their injured loved one. 

Don't judge the situation, we may never know what really happened.
**********************************************************
There has been a great deal of talk about letting our soldiers carry weapons while on post. 

This is not a war zone. This is their place of employment. Do all of you carry guns to work? 

What these soldiers need other than carrying weapons with them at all times is better and faster access to mental health care. When and if they receive that care they need better treatment from their Command and their peers. They need Commanders that don't ostracize them or make their lives harder because they do not understand their issues.

Until the stigma is gone these types of incidences could get worse.

That being said I am a firm believer in my right to bear arms. I just don't think it's a viable solution to the military's mental health issues.


Comments:

I agree. I believe it puts not only the soldiers in harms way but everyone else also.

I totally agree.

I don't see it as a either or, I see both. Should the mental heath care be better ,YES. All the care for our troops should be better. Should all the troop carry arms,NO . But I feel that there should be more that do. As for this being a war zone, well I guess that would depend on how you define war zone. For years I have been sick of how our country treats or military .

We have new concealed carry that says you can take your weapon into bars and onto school grounds, pretty much wherever you want. When I visit doctor offices I see a decal saying no guns in here. But there's also no penalty for not following that rule. Most folks around here, also a military community (Ft. Bragg) think it is terrific. What I see happening is not what I expected. It is that in any sort of confrontation a "good guy with a gun" must assume he's facing off with a bad guy WITH A GUN so they shoot first... knowing very few questions will be asked later. Stand your ground is one thing, preemptive murder is another. Robin I think you should send your message to the newspaper, make it a comment on news station blogs and your blogs. The system is so deeply flawed and it isn't just the military, this attitude towards mental health is pervasive.

I totally agree its time for serious changes in the way the military treats the soldiers

Change needs to start at the top ! All Americans need to change how they perceive our men and women in the service.

Well said Robin.

I would have to agree that this is "war zone." Just a different type of war that we have to fight FOR our soldiers. Very good point.

Tuesday, April 1, 2014

It trickles down.

I AM raising my voice about the care and treatment that my husband is receiving. I will continue to raise my voice. For whatever reason they want a definitive diagnosis. I'm sorry they will have to wait until he is dead to get it! Progressive dementia regardless of etiology is all basically the same. There may be one or two variables among them or they may be identical. It simply should not matter what TYPE it is. Period! 

I cannot tell you how upsetting it is that I keep hearing "they haven't completely ruled out this or that." Ya think? They probably never will until his brain gets sent to Harvard for additional studies after I no longer have him. Hopefully long after he is out of the Army. 
Reference the picture above now. See how that works? It is very sad that the one person that does see my husband and who is also a good by the book NCO does what he is told is catching grief for me speaking out for my husband. He is catching grief because I am upset about the searches in our home. These searches are contained to the kitchen. This is MY territory and I become very upset when anyone touches my kitchen much less a person that is not much more than an acquaintance to me. Regardless, these searches are unnecessary and intrusive. I do not blame the Squad leader for doing what he is told to do. I simply want to know WHO told him to do it and WHERE is the directive or memorandum to do these searches. 

I have no issue with home visits. Stop by whenever you like. Well, give me 15 minutes notice at least. His squad leader does do that. It's not a surprise. The point being get out of my private life. Since WTU I can honestly say I do not feel that I have privacy any longer. They want to know my Doctors appointments, they search my kitchen, come into my home on very short notice. Yes, these are also my husbands things but I am not in the Army. 

All of this with my husband is madness. It makes no sense in the world why they won't accept his diagnosis from THREE different doctors. It is what it is. They need to accept it and deal with it. We have. What do they have to gain by denying his diagnosis? 

No missed appointments. He is where he is supposed to be when he's supposed to be there. He has (with my help) completed all administrative paperwork in a very timely manner. 

WHY ARE THEY MAD THAT HE WAS DIAGNOSED WITH DEMENTIA? 

Yes, I did scream that. I needed to scream. 

Is it because that explains his weird behavior over the last two years? His impulse issues with alcohol? His sleep issues? Anxiety attacks? Hallucinations? Getting lost while driving?  

Stop pointing fingers at the lower levels and my husband and start taking responsibility for not knowing about his illness and start to make things right. 



**I know there are people reading and following. I know you express your concerns on Facebook or private messages. I need you to help me speak out. Comment how you feel or what your reaction is. I know the comment form can be a hassle because of Captcha's but if they are not in place then the blog gets too much spam and I don't want that for you.**



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