Saturday, October 30, 2010

Another slide down the slippery slope

 Thursday evening, Ryan was running a temperature, later the next morning he was too feeble to walk or talk. The day nurse wanted to prepare me for the eventual conclusion of this newest turn down with Ryan's health. 
For the umpteenth time I gathered my courage and did what needed to be done.  Back to the hospital for more tests only this time....., this time no blood work, no needles. just an xray to determine ~pneumonia. new medication, but with the knowledge that these drugs will do what they are intended to do. 
The fever is lessened. He's making sense again.he seems not able to walk without assistance and is not eating very well. he sleeps 23 hours a day. I thank God for the strength to go the distance.

Wednesday, October 27, 2010

new season

I'm watching my beloved Ryan slipping away. He's  been bed bound for four days now, he only gets out of bed with assistance to use the bathroom. 
He has a halloween party to attend on Friday. The Mad Hatter costume is all ready for him, whether he's ready for the costume and the evening is very "iffy". One last hurrah, Lord, just one last hurrah.

Tuesday, October 19, 2010

Bureaucracy and Social Medicine, A VILE MIXTURE

so, Ryan has had the very bad manners to live longer than the social support system would allow. The night staff has been removed. costs to have a nurse stay with him at night. He has over "lived" his 6 months and now the bureaucracy wants to eliminate him from homecare and place him in a longterm care facility.
now I'm to care for him all day and all night as well. Let's pray to God that I can keep up my strength.
At the end of the day it always boils down to money. 
Q How much is your life worth?
A How much insurance do you have?
This means of course that I now sleep on the couch in the room where Ryan sleeps.

Is it too much for me to want him to live out his last weeks at home, letting him pass away in the bosom of his family. To keep him out of an institution?
apparently, YES

Wednesday, October 13, 2010

sometimes it's like chewing fog

did you know that, no matter what is happening within your life,what drama is percolating in the background. Even to death, still life carries on as the waves lap the shore. Bills must be paid, food purchased, cooked, eaten and the whole mess has to be cleaned up. Certainly I have always been aware that nothing stops for any reason  though i would wish it were so. 

 I would raise my hand, palms upward and yell STOP at the top of my lungs.  my cry would be but mewling cry amidst the din of noise that is life.

  I must now contend with the megalith that is the insurance empire, and attempt to suss out what hoops I have to jump through which will continue to enable me to collect some partial monies which allows me to homecare Ryan. On my worst day at work, when I wanted to scream at customers and throw things. When bosses were breathing down my neck. Nothing was worse than a day where Ryan couldn't stand or hold down food.

Life has such lessons to teach me.   it's like chewing fog

Monday, October 4, 2010

treading softly

So, here we are in October.Never thought that Ryan would make it this far. It seems that he is in a remission for the time being.  It's stressful waiting for the other shoe to drop. Knowing that any day at any time he can simply start failing again. Despite the stress, his father and I take every advantage. On the boat for the weekend. out to visit family. even took him to the mall. we were only there for 20 minutes before he had to be taken back home.Nevertheless, when he has the energy, we go for it.

There have been so many ups and downs so many times were we thought our son wouldn't make it through the week. Then he would rally. He's a fighter all right. He's not leaving until he's good and ready. This weekend is Thanksgiving. We're all going to celebrate with the family. simply amazing!