A place for hope

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I am feeling more optimistic . Today my brother was moved from the hospital to a nursing home dementia unit. He spent 101 days in the hospital, cant imagine what that bill looked like!

Now he can settle down into a routine and be able to move around a bit. He will be secure, ¬†surrounded by people who know what his problems are. He can tell whoppers with the rest of the old soldiers and not remember a one of the stories. He can have conversations with people who died 30 years ago and nobody will think its strange, because they all do it. ūüôā

Now my mom can relax a bit and stop worrying about everything. She took care of him for ten years, to keep him out of the public and off the streets.  Now she realizes it was the disease process and nothing she did could have changed the outcome.

Mom is a really special woman, always taking care of everyone else. She is just amazing in all she has done in life to help others. I am blessed to have had her in my life.

When I hear the stories of the generations before me, I realize what treasure really is. The treasure is the love they share despite the worst odds.  Its all about love.

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No I am not drunk, my life with Menieres disease.

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I thought I would post some information about an orphan disease I have had since I was 18 years old.

It has affected my life in so many ways .It affects about 3% of the population. It is known to go bi-lateral in some.  Thats the big fear of all of us who have it.

Mine was pretty severe for about 20 years, then it reached burn out. So yes it can get better! There is hope. Todays treatments are so much better than when I was a kid. My only choice was a brain surgery to clip the nerve to my ear. Without insurance that was not going to happen.

There is life after Menieres, it can leave us with disequalibrium. A constant feeling of being off balance,  clumsiness,  and some mental confusion.

Here is a link to a better explanation of what it means. I would urge anyone who is having vertigo to seek help, it sometimes takes years to get a correct diagnosis. Healthcare has come a long way and life doesnt have to as limited for those who have Menieres disease.

http://vestibular.org/menieres-disease

Free at last

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There has been so much negative discussion coming out of blogs dealing with the Thrill of the Chase lately that its become positively disgusting to read. Forrest told me long ago to stop reading blogs. I have to agree,  they suck the fun out of the search.

I will continue on my own path without input from others. Its been funny watching people make assumptions about what Forrest has said. Its a cute little trick that everyone thinks they are the ones he has been talking about when he makes comments. I have been guilty of that in the past myself,  it was a valuable lesson to realize that his comments only have confused the searchers.

I enjoy talking with Forrest, he is so smart and funny. He reminds me of all the good things in life that everyone should have in their lives.

Is there a treasure?  I like  to believe there is. I wish all those who dont believe would get on with their lives.

I’M FREE- I’m free,

And freedom tastes of reality,

I’m free-I’m free,

AN’ I’m waiting for you to follow me.

If I told you what it takes

to reach the highest high,

You’d laugh and say ‘nothing’s that simple’

But you’ve been told many times before

Messiahs pointed to the door

And no one had the guts to leave the temple!

I’m free-I’m free

And freedom tastes of reality

I’m free-I’m free

And I’m waiting for you to follow me.

Peace!

Nuts and bolts

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I am learning lots about how the body can go haywire and result in brain damage. My brother has always had issues with food. He has been a picky eater his whole life.  It probably had to do with his congenital heart defects to begin with but progressed as he aged.

There is a disorder called Wernicke Korsakoff Syndrome. Its associated with alcoholism,  eating disorders and intestinal surgeries that remove pieces of the intestines. Its a disorder in which the body can no longer process nutrients, the vitamin thiamine in particular.

Once the body has reached that state all it takes is a high dose of glucose to cause a dominoe effect that leads to brain damage and a host of psychiatric symptoms.

My brother messed around,  didnt eat and indulged in binge drinking. Now he is paying the price. He has brain bleeds, lost his memory,  and is unable to make decisions for himself. Its classified as a form of dementia. The most odd symptom is called confabulation. Thats when his memory pulls a blank and he makes up stories to fill in the blanks. He hallucinates,  and talks to people who died 30 years ago.  Its all very sad.

I thought we had found a placement for him,  it fell through at the last minute. So he sits in the VA hospital waiting for an open bed on a locked unit. He needs intravenous meds, cant walk by himself,  doesnt know wher he is or if its day or night.

He is my only sibling. Its a sad state of affairs. This week he weighs 109 pounds and is 6 foot tall. So please be aware that its not only a disorder of alcoholics, it can be found in those who have had bariatric issues, intestinal problems, bulimia and even severe  morning sickness can trigger it.

Eat to live.

Legacies

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I have been doing some pondering lately,  trying to figure out some pretty painful stuff. How much abuse can a child tolerate before they break, never to be fixed?  Thats what happened to my brother.

Most of my life I have avoided him because his violence was out of control. My father started a cycle of pain that never ended. His father did the same to him. I will never understand why anyone could take out their pain on a child. Many do it though.

Last month my brother used alcohol to end his pain, except it didnt…yet.Now he lingers in a hospital, that he will never leave. I see his wasted body and hear his words that make no sense and it breaks my heart.

My mom refused to take responcibility for making the decisions about his care. Nobody else left in our family but me. So now I deal with handling his affairs even though he tried to kill me with his bare hands. When I look at him, I dont see the angry man,  I see the small child he was. He does not understand that he is dying or that he will never leave even if he does survive the infections that have infiltrated his system.He has lost the ability to make decisions, has delusions and cannot digest food. He cant walk or take care of his own basic needs.

Still I feel guilty about not wanting him to survive.   I know if it were me, I would not want to live. What kind of life would that be? Lots to think about. What would you do?

Summer of Love

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This summer I will be busy working on things I have let go the bye.  I seem to have hit a spot where I can no longer justify being obsessed with a dream. Time to return to earth and deal with more personal things.

The tone of the community has become much too antagonistic and aggressive. The personal attacks have taken all the fun out of the dream. Guess I will stay home and play canasta!  LOLGYPSYINTERIORoceanmythos.tumblr