Thursday, July 30, 2009

My Hospice Saga

I have been so overwhelmed these past few days. On Sunday, Mike's aid took a day off (deservedly so), but I had to take care of Mike all day. I had started not feeling well and it only got worse.

On Monday, work was UNBELIEVABLE. I can't remember the last time it was that hectic. Add into the mix, me not feeling well, trying to get Mike and hospice straightened out, thinking ahead to Brandon's surgery and Courtney's tuition bill due on 8/3, I was good for nothing. As strong as I am, I think I came close to my breaking point.

To date, Courtney's tuition is still up in the air, work is still crazy and I'm still working on the hospice situation. Not much has changed.

I spoke with one hospice yesterday and they, very politely said that if our current hospice discharged Mike, there's nothing they could do. I quickly pointed out that Medicare's Guidelines for Hospice Care gives a list of reasons why a hospice can discharge a patient: 1) they pass away, 2) they move, 3) they request a discharge themselves or 4) their illness is no longer considered terminal. As much as I would LOVE for #4 to not be true, Alzheimer's is, unfortunately, always terminal. This is not the same disease as cancer, where by the grace of God a patient can go into remission. There is no remission for Alzheimer patients, so how then, can they delare that Mike is no longer considered terminal??? I got no answer, "they just do". If they developed a cure for Alzheimer's, I wish they would share it with me.
After I got nowhere with my second hospice (I was hopeful since it was Good Shepherd Hospice and is affiliated with the church), I set in motion my call for help. I reached out to all my contacts within the Alzheimer community. After many calls, and e-mails, I am waiting to hear back from one hospice who is hopeful that they can take Mike's case. All I wanted was for Mike to be evaluated, because I believe once he is seen, he will not be turned down. Good Shepherd asked: does he still walk - NO, does he talk - NO, is he incontinent - YES. They seemed surprised that he was discharged, but nonetheless, didn't seem too eager to help.

Our social worker said she would move "heaven and earth" to help us. Funny thing is, I told her that she shouldn't have to. Mike should be ENTITLED to these services - no questions asked. Alzheimer's is unpredictable - Mike was given Last Rites 2 years ago. This disease does not take the same course as other terminal illnesses, where the amount of time people have left can be predicted. I was once told by a hospice agency that they had gone to an Alzheimer's patient's house 3x in anticipation of their death. Family was called all three times, they were expecting the end. Three times, the gentlemen woke up the next day like nothing was wrong. I remember thinking about that poor family and all that they were going through. It's a shame that families that are already in a crisis, can't get the help and care that both they and their loved ones deserve. I get VERY defensive when it comes to Alzheimer's Disease because from day one, I have had to fight for everything for Mike. If anyone is ever discriminated against, it's Alzheimer patients.

1 comment:

Carl in NC said...

Sorry to hear about the struggles with the Hospice situation. :-(

I'll pray for you and your efforts to get this resolved. I'll also pray for that you stay well during this extra stressful time.

Take care and God bless,