I want answers.
There are no answers. I feel like throwing up.
What is this??? Is it ALS or is it the big ugly multiple blood clots??
We do not know. When will the blood clots dissolve?? We do not know.
What causes ALS, what cures ALS...we do not know. Will he die of the blood clots?? etc. etc.
Always the same answer....Always..He has shallow breathing, he has this, he has that...
I am getting a bit pissy.
My man is so weak and so fatigued. He has lost weight, he can only eat with tube feeding.Today he wanted to get into his automatic wheelchair at the Hospice House because with all the accommodations it can provide, it is more comfortable and he wanted to sit in the sun.
It took THREE nurses to move him with the Hoyer lift. And they want to send him home Friday???
To little ol'me????.
I insisted on discharge on Monday. I am trying to imagine how I am going to do this.
Here is where I rant about the cost of catastrophic health care in America
His health needs nursing care. Because we have worked and have no debt, we are not eligible for nursing home care without spending down our money. I cannot do that because I have 3 grandchildren to raise and my own life to live. Hospice crisis care is only until the crisis part is past.
So to stay in Hospice is $250 a day. To go to a nursing home is $250 a day plus. All not covered by Medicare or BC/BS
So, he comes home. with nursing care that is at least $20 an hour for 24 hours times 30 and we are looking at an amazing amount of money.
Let me tell you it is more than Fabric.com
Coming home with Hospice means a nurse on call or a regular visit once or twice a week. It does not mean 24 hour nursing care. Now if we had wanted the expensive long term care insurance, it would have been helpful. But, he could not get it with the huge family hx of cancer and I could not get it with asthma.
So..please tell me America that I love...what to do now???
Sigh...In 8 days, our lives have changed from sad to desperate.
Huge big blood clots in both lungs....Please???
I ask you is not suffering from ALS enough??
Just delete the rant...I cannot believe I am ranting online!!
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Dear Diane, I'm sending you all my love.
ReplyDeleteDiane have you tried N.C. Area agencies on Aging (AAA)? It's worth trying them for some help. It's not suppose to be for the poor. It's suppose to help all old people with problems. Here in Pa. they are helping me set up help for when I come home with the hip replacement. It will cost but the amount is much cheaper then if I tried to hire help on my own. Try to figure out the times of the day you will need help. Don't let them push you around. They told me they only did 4 hr. shifts. I don't want to pay for that. I want 2 hour shifts..morning and night..they did agree to that after a big fight. I guess he's not a veteran? I can't imagine them just sending him home without a plan for his care.
ReplyDeleteI don't have any words of wisdom. I wish I could give you a big bug. xx
ReplyDeleteNothing about this is fair. Nothing about this is right. It is all horrendous and unfair in all ways. It has already destroyed his body, but try not to let it, or your life, or your children's lives get destroyed by it too. Yell, scream, vent all you need to here. Voting Americans need to wake up and understand what so many of us have go through and how messed up our society's values and our health care system truly is not most of all we need to see and to feel one another's hearts. We love you and we are all so, so sorry it's so darn hard and so darn unfair.hugs hugs hugs
ReplyDeleteThe health care system has gotten down-right scary. I'm so very sorry you are going through this - ALL of it. Sending you my thoughts and much love. ((Hugs))
ReplyDeleteAnd don't apologize for ranting!
It's far better to rant on-line than hold it inside or rant at home! I consider this very smart of you, Diane. I am constantly checking for updates from you and appreciate all communication telling me how you're doing.
ReplyDeleteOh I'm so sorry to hear of yet more stress for you. I wish I was nearer to help. Hugs.
ReplyDeleteRant, get it out. It`s okay. Is there a state program you could call? I know you are frustrated. So were we.
ReplyDeleteHolee`s comment is good advice.
ReplyDeleteI'm another with no words of wisdom of suggestions, just a willingness to listen to your well-deserved rants.
ReplyDeleteKeeping you close in my heart.