Friday, February 18, 2011


At times like this, I am truly thankful for the knowledge that God holds everything together and I wonder; if I didn't know this fact what in the world would I do?
Dean's dad entered into home hospice care 2 weeks and ago and then was admitted to Wyandotte Hospital last Sunday when he had deteriorated beyond home care. There are two issues with his health, primarily is the dementia which is in the advanced stage. Secondary is atrial fibrillation-a cardiac problem. Ben's dementia is called Lewy Body Disease and it is a sort of cross of Alzheimer's Disease and Parkinson's Disease. Last weekend the combination of the two had him falling constantly, unable to understand what we are saying to him and increasingly agitated. After Dean spent the weekend running repeatedly to their apartment to help control him, the hospice nurse came on Sunday and called an ambulance because his behavior was dangerous to himself and to Dean's mom who is not able to adequately provide care to keep him comfortable.
So he was admitted and here is God holding life in his hands-usually Ben would go to a hospice room on the sixth floor however, on Sunday afternoon there was a plumbing problem and that room was shut down. Instead, he was routed to the fifth floor where my sister is the Clinical Coordinator/Nurse in Charge. Can't you almost see a couple of angels taking the pipes apart? :)
With better medication management Ben was quickly made comfortable and peaceful. His appetite had been inconsistent for a few days and by Tuesday a combination of the disease and the medication necessary to keep him quiet had resulted in his stopping eating all together. That's ok, it's part of this process. The hospice doctor and their family practitioner decided Ben could not be returned to their apartment because Dean's mom can no longer provide care to him and they ordered him transferred to a nursing home for hospice.
Well...guess what? Medicare does not provide room and board benefits for nursing home care. So if he goes there, his entire social security check will be taken to pay for it. His mom will be left with $600 a month. Just her rent is $850. Amy spoke with everyone and told them that this was impossible, another solution would have to be found and it seemed that we had found it. The Veteran's Administration will not provide nursing home care unless he has a service-related disability or is indigent (neither apply) but they will provide hospice care at their hospital. So that was the plan until...
On Thursday we were informed that he does not meet criteria for the V.A. hospice benefit. Amy spent the entire day running around trying to figure this out (God is using her hugely in this.) Ultimately the social worker could only say "he doesn't meet criteria, I don't know why." Not an acceptable answer but we are stuck for the moment with it. With Amy's help, the whole process was sort of stopped on Thursday night to be revisited today.
I have taken a day off work to try to help sort through all of this. Sunday will be Ben's last Medicare covered day in the hospital and all the doctor has to offer is that he will move him to the nursing home leaving Dean's mom without enough money to survive.
In the midst of all of this is Ben who lays quietly, although very sedated, in a hospital bed. His breathing is changing and his vitals signs are irregular. Yesterday his heart rate stayed around 115 all day. Some of the hospice team say that he can't go to the Veteran's Administration hospice because the requirement is a life expectancy of 2 weeks or less and the doctor doesn't think he can predict that. Some of them say he isn't quiet that advanced and maybe if we took him of the medication he would start to eat. Of course, he would also start to hallucinate, strike out in fear, fall, be incontinent and have to be restrained to a bed. He stopped speaking a week ago and recognizes no one. I've never heard of someone in hospice having such a difficult time. As my sister said yesterday, this mean is 83 years old. He served his country and then worked until the age of 80. He deserves comfortable and dignified care and that's the end of the conversation. The doctors think that a nursing home will provide that and leaving his wife unable to buy medication or food is not their problem as she is not the patient.
There is every probability that Ben will not survive until Monday. If you asked me to guess, I'd say he won't. This, now, is our prayer. That he will remain comfortable and peaceful even if he is sedated and that there will be no more moving for him. He has wonderful nurses tending to him and he is close by. Dean and his mom need to be able to spend this time with him and not terrified of what might come next-will they take him off his medication? Will they move him and leave her indigent?
To paraphrase, even so Lord Jesus come for your child.


Pat said...

Agreeing in prayer with you.

Trish said...

Sara...This leaves me in tears.
Praying, that these struggles will soon be over and that Ben will soon be at Home with the Lord.

Margie said...

This makes me so angry! ok, i said it. If he was some schlep who was a drug addict (yes, I know a sickness) or some slacker who was on aid, the state would take care of him, however, this man, worked his whole life, served his country... and as a nation he not only deserves great care, WE OWE IT TO HIM!

I'm praying, haven't stopped. And yes, I could hear the angels unscrewing the pipes!

His arm is never too short! NEVER!


Stacy said...

This is terribly sad Sara...praying for mercy, grace, and provision.

donna said...

This makes me angry, sad and unbelievably disappointed. But more than anything, I am praying...yes I am praying