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!!