On Saturday, Mike started coughing when we put him into bed. It was a productive cough and I didn't think anything of it. Then a few hours later, the fever came. It was so high, I was afraid to use the thermometer for fear of the number it would read. Mike's face was beat red, his breathing was fast and he was moaning. I gave him alcohol rub downs all night while I was turning him. I set my cell phone for every 2-3 hours so in case I fell asleep, I would get up. Moving him from side to side was difficult because I knew no matter where I put him, he was resting on a pressure sore.
As I was cleaning him Saturday night, the sore on his bottom got worse and it opened up. It looked terrible. Now, there was no SAFE PLACE. Both sides AND his bottom had pressure sores and there was nothing I could do for him.
Last night I also turned him every 3 hours and gave him Tylenol for the pain.
Today, the sore on his bottom opened even more and I called Hospice to send a wound care nurse - this hospice doesn't have wound care. Huh. His nurse said she would come and give me a call when she got there...no call yet. I'm sure she's been there and gone already, it's just the way it is.
I'm tired.
Follow You, Follow Me: A Young Family's Journey With Young-Onset Alzheimer's Disease
12 comments:
Ms Henley,
I read Ms Brown's article in last sunday's newsday with a mixture of sadness and anger. You and your children have gone thru hell and back,and the system shafts you at every turn.
I dont mean to run your life, but you need to get some kind of coverage for yourself and your children,even if it means going to DSS and applying for medicaid. I just dont understand how a lawyer doesnt offer health insurance to his/her employees.
I have a neighbor who has been out of work for close to 3 years (as of june)Last november he was in a car accident.Uninsured he wound up with a six figure medical bill and is now headed for bankruptcy. He told me that he's sorry he didnt take my advice.
I hope that you do the right thing in the end.
Seth,
She is probably not elibible for Medicaid! That is one of the problems, she makes too much for medicaid but if she did not work she would loose her home however, all the undocumented people in this country get free or five dollar co-pay health care and many many other entitlements that hardworking Americans are not eligible for!
here here
The problem is our system and saying it's all the fault of undocumented people is incorrect. How exactly do they get free health care? They don't, they have to pay out of pocket like anyone else without insurance. And many of them are also hard-working Americans, who don't receive any special "entitlements" and who also won't have the benefit of social security even though they pay into the system.
Cannot help but comment. This is a sore point with me also. The undocumented do get Medicaid. Medicaid calls is "emergency Medicaid". I do medical billing for a living. Another example-pt is citizen in Canada, daughter lives here in US. Mom is very ill and they do not want to wait for medical care. Pt comes in for PET/CT exam where I am working-a very expensive test....she has Medicaid....How the heck did she get that? My son has a mental illness and we are constantly fighting for Medicaid benefits and he was born here and we have both paid into the system. I think you are really way off base here. We should have more affordable health ins for the "working poor".
I agree we should have more help for the working poor but I don't think that means allowing the undocumented to suffer. The undocumented do receive emergency Medicaid, which is for serious or life-threatening situations. Would it be better if we let these people just die because they don't have the correct paperwork even though they have lived in this country for years? And they do pay into the system--in fact they pay much more into the system then they receive in benefits. A National Research Council study revealed that immigrants generate public revenue that exceeds their public costs over time--approx. $80,000 more in taxes in their lifetimes than they receive in federal, state and local benefits. In addition, the average immigrant uses less than half the dollar amount of health care services than that of the average native born U.S. citizen. Yes, they can get emergency room care under Medicaid but studies have shown that hospital emergency rooms with high rates of care typically are not located in areas with high immigrant populations. And even legal immigrants must wait five years to become eligible for regular Medicaid benefits and they too pay into the system the whole time, without receiving the benefits. So don't believe the myth that somehow undocumented immigrants are getting more or better care than those born in this country. And, to get back on topic here, the whole damn system needs to be revamped!
Dear Anonymous 2, you are incorrect in saying its not the fault of undocumented! It is quite a bit their fault. They know how to play the system and they play it very well! While we are out working hard, they are hardly working (not all of them of course, but a very large number). The ones that don't work get the liberty of staying home with their children and get many benefits from the US govt while doing it. They get WIC, they get medical insurance (free or $5, yes I was correct when I originally said that)! They receive many "special" entitlements and just to clarify one thing further if they are undocumented they are NOT Americans as you stated! I am not sure where you are getting your facts, but you have them incorrect!!
OK, I'm not going to take up much more of this blog by trying to educate you about the undocumented since it seems you have swallowed all of the popular lies without question, but I will say you are very wrong on this subject and obviously have no evidence to back up any of your claims, as I did previously (and if you want to know where I'm getting my facts, well take a look at the study I cited for one! Or simply google "immigrant myths" and you will learn a lot). In fact, many undocumented are hard workers who come to the country to have a better life for themselves and their families. If that doesn't make them Americans, especially after paying more into the system than they receive back in benefits for years and years, then I don't know what does. Most of the people who take advantage of our government benefits, like welfare, or farm subsidies are white, native born Americans (it's a fact, if you actually care about such things) and also you should know that there are undocumented people whose sons and daughters serve in the military and even some undocumented who themselves serve in our military, protecting the very freedoms you say they don't have because they're supposedly not Americans. I say anyone willing to put their life on the line to protect America is an American, no matter what some piece of paper says.
I just want to say one thing....whether documented or undocumented, I can tell you for a fact that all the aides that Mike has had these last 7 years never had to worry about health insurance and only 1 out of the 4 have been America citizens. I can also tell you that they DID pay taxes - which I always thought was weird. They do not have social security numbers, but they have taxes taken out of their paycheck.
Now I'm not sure where any of this leads to, between my two arguing "anonymous's", but one thing is fact: The current health care system STINKS! I've been working since I was 16 and I feel it's criminal that I can't afford health care for my daughter and myself (once Brandon turns 19 he will also be without insurance and I will have to personally pay for all of us - to a tune of $1,200.00 month if I am lucky!).
Mike has also been working since he was 16, paying taxes all along, yet when he became disabled, it was such a fight to get services...and still is.
I ask only one thing from my followers...think long and hard the next time you have to vote with regard to health care. And DO NOT THINK that a serious illness can never happen to you. All it takes is one bad hand and it could change your life forever.
Anonymous, I do have the facts correct. I actually work in the health care field where the undocumented, illegal and un and underinsured get health care on a sliding scale basis. If you don't work and work the system you get a $5.00 co-pay. All the hardworking people would pay at least $50.00 for the same service. So don't tell me to read your studies honey. I work in the field and know how the field works. Why don't you OPEN your eyes and realize you can't believe everything you read. Do you believe everything you hear on TV also? Its no wonder you are so mislead!
P.S. I will no longer comment on this issue, You can try to enlighten people but sometimes people wear blinders and only want to believe what they want. Everyone thanks to our great country has freedom of speech and the right to believe what they want. God Bless America!
LOL, oh yes, I'm so "mislead" by all those studies, news articles and statistics! Pssh, facts, who needs those! What was I thinking when I can just find out the whole truth about life from you, anonymous, and your myopic view of things from your little corner of the world! Thanks for opening up my eyes, sweetie! I will say one thing, you're right about people wearing blinders--too bad those blinders also prevent people from looking in the mirror.
And yes Karen, the health care system stinks more than a garbage dump and has been especially cruel to you and your family. I can only hope that our ELECTED officials get their act together and realize that there needs to be real change otherwise all the people who VOTED for them will be in dire situations (that won't happen to the officials themselves of course, no matter how bad things get, they have money and resources none of us regular working folk will ever have!). Stay strong, you're an inspiration to many!
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