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Providing non-judgmental and non-criticizing support for family and friends of end-stage alcoholics through one-on-one coaching, support groups, blog posts, workshops and public speaking.

Saturday, March 10, 2012

No more nurse...

I hate it when I misunderstand a purpose or intention. I learned something yesterday and I should be happy, but…

Riley is doing very well. Seems I’ve been an over-achiever at making sure he eats SOMETHING, takes all his medication, and rearrange the furniture to prevent so many falls, Riley’s over all condition has improved.  In fact, he’s improved so much, he’s no longer going to be considered as a “hospice” patient. Instead, he will have a visiting nurse and a bath aide for only two more weeks. Then I’m on my own again.

The fact is it’s not so much that he has improved, but rather he will have reached his limit for provided care under his current insurance. We have great coverage, but his wounds are healing (from his constant picking and scratching – a condition created by the lack of bathing), and he is falling less often. There are still a lot of issues, but I guess there is some kind of scale and he doesn’t reach the right number on that scale. In short, he is better than he was even though in reality he is just the same. He is still dying, but there is really nothing that can be done and it can no longer be determined that it will be within a certain time.
Off the record, the nurse confided that she was really only there to evaluate the need. Riley doesn’t really need anything a nurse can provide. She is simply the visiting nurse who provides the information to the insurance company so they can determine what he is eligible for in terms of professional care. Evidently the primary care doctor didn’t push for anything more at this time since Riley has an excellent caretaker within the home. They could not monitor him as closely as I am already doing.

I confided in her that I needed to keep Riley alive for another six months, or at least until his VA application was approved. She said, in her opinion, his heart would not hold out that long. His blood pressure is all over the place – high, low, very high, normal within days of each other. His heart beat is very erratic and is stopping for a few seconds every minute.
When I asked what was most dangerous, the ammonia level in his brain, or his erratic heart? She said it was a toss up. The ammonia will put him into a coma and then his heart will give out along with the rest of his organs. OR, he will have a heart attack and just be gone. Either way, the end is near.

In her opinion, what I needed was a personal assistant to come in maybe 4 or 5 days a week. The assistant could tend to Riley’s personal needs, stay awake while I’m sleeping and provide him some companionship. The assistant could also help to transport him to the doctor’s or just get him out of the house. There is no insurance coverage for that and it is certainly not in my budget.
She also told me, off the record, as Riley gets worse, I can always call the doctor’s office and ask for another evaluation. It seems our doctor is good about that. I should wait about a month (if he lives that long) and then call.

It’s a little frustrating that I won’t have the nurse or the bath person anymore. But, on the other hand, Riley dislikes having his day disturbed and becomes irritable when they are here -- especially the bath person. He hates the bath person. He’s like a cat when it comes to bathing – he just knows that water is going to make him melt away to nothing.
Today, I don’t have any fight left in me. I’m too exhausted from trying to jump to his every need. I know I'll be better tomorrow. I DO have nearly all his medical records together and ready to be sent off to the VA. I have my fingers crossed that all my record gathering will pay off in shortening the processing time for his application. The only thing left for me to do is find a way to get him to a VA Hospital for his medical evaluation. Once the application is approved, I will be able to afford a full time personal assistant. What a relief that will be!

I suppose I should be happy that he is getting better?? I’m a realist. I know he may look better on paper, but the real person is no better today than he was a couple of weeks ago. He’s on the edge. I doubt he will last until the VA approval.
But still my plan stays the same, if he becomes unconscious, I will still call 911. If he survives, I will place him in a nursing facility – I know his insurance will cover that. It’s really the best way to keep both Riley and me safe. According to the nurse, the stress of detox, with all the ammonia in his brain, will most likely leave him with over whelming dementia. She asked, “What kind of life would that be for him?” I answer her “The life of his own creation.”

6 comments:

Syd said...

He may surprise you, Linda. My FIL has been a coma several times from ammonia build up. Given lactulose, he comes back and is doing well at the nursing facility. Hopefully, Riley will get into VA where he can live out his life. And you will have a break from focusing on him.

ADDY said...

So sorry - this is part of the roller coaster I was so familiar with. Up, down, up, down, round and round. What is the VA you refer to. I presume an American term for something we may or may not have in the UK.

Linda -- Immortal Alcoholic's Wife said...

ADDY -- VA stands for Veteran's Administration. It provides services, such as medical facilities, prescriptions,and compensation, for people who have served in the military. They have a disability program if you were injured or became ill while on active duty you may be considered as disabled even if you are still capable of working. This includes alcoholism.

The trick for me is that his application must be approved prior to his death. While he is alive I will receive money to help take care of him. Then, after his death, I will receive a portion of that money for the rest of my life.

Kibble said...

I understand your wanting him for very practical reasons alone to make it until the VA approval comes through. For that to happen, it's going to be very important that he have regular lab work done to determine where his potassium level is at, so when it goes low he can be orally supplemented.

You might be concerned about the pressure to hospitalize him when his liver function or ammonia numbers are acute. You could explain to his doctor your desire that he remain at home and ask that only a "basic metabolic panel" get done.

I think the doc will work with you becasue he is NOT going to be happy that the hospice dumped him. The practice can advocate both with the hospice and the insurance company if they are willing to. Hospices depend on doctor referrals and the hospice will be responsive to a doctor calling and saying why should I refer to you when you dumped my last referral.

But even if not on hospice he can have those draws at home. A home health care agency that's hungry enough will be able to convince the insurance company that he is homebound, but you may need to go through a couple.

You are an astoundingly diligent caregiver but they are wrong in saying there is nothing the professionals can and should do for him - at the very least he need electrolyte monitoring which you can't do.

Quite frankly I am shocked that the hospice is dumping him. Eligibility for hospice doesn't require that they know for sure he will die within six months. Nobody ever knows that with certainty; we don't come with expiration dates stamped on us. His cardiac status alone places him at high risk for imminent demise. His ongoing active alcoholism with a history of recent hospitalization would without question make him eligible for Medicare coverage for hospice. If you do have great coverage with your insurance they should follow the Medicare guidelines.

You could talk directly to the insurance company if you wanted to advocate either for continued hospice or home care blood draws. Most these days have their guidelines online. Stress NOT that it's too hard to get him to the doctor but because of his 10X falls per day it's not safe for him to go.

jo said...

insurance has to pay for hospice? thats gonna let me out when the time comes. i need to ask my cousin how it worked for her. altho 3 home health agencies refused to mess with hers--legally yes they can--..he was too obnoxious..and hospice did little to nothing for him. (prob because he was too obnoxious)

linda, dont be surprised ok? but the VA takes a LONGGGG time to get disability. some i know have taken 2 yrs and most are still trying after 6 yrs. so dont be surprised. 6 months and i would faint if you get it.

you MUST have a letter saying this is more than likely due to his military service or they will toss it out. and dont count on the C and P exam at all. they are there for their butts, not yours. you have to get him to the C and P but they will pay you so much a mile for travel. we are 3 hours or more from the VA hosp here.

the VA provides care free only if you fall below a income limit...and certain kinds of care ONLY if you retired or can prove disability from the service. mine is neither, i cant prove any of his mess, tried..and we make too much (30,000$ yr) to qualify for the free stuff. each visit is 50$, each med is 9$, (wasnt told this for 2 yrs!) the ones he doesnt take lol..and it added up quickly on us. if you dont pay, they will take your income tax refund.

the criteria here for hospice is 6 months or less, (if they make it 6 mnths, this can be extended indefinitely) and im surprised your dr is doing this! what is his prob? they always look better,,,a little food and soap works wonders..but they are no better. i would argue or appeal this.

best of luck on the VA, ours here sucks. they dont even think mine drinks. HA. and ammonia is not in a basic metabolic panel. it requires iced blood in transport...they must know this in advance. numbers arent helpful anyways. some with low will hit a coma, some with very high wont show any affect at all. not that important.

to draw bloods at home are around 100$ or more...each time. i used to do it for a living :) its prob more now. a bath was 50$.

Janey Estrada said...

Linda,

I stumbled across your blog and reading the words hurt my heart and brought years of memories crashing down on me. It seems as though I could have written each word in each post. My husband, Wayne - is also an end stage alcoholic with an unholy power to regenerate after coming perilously close to death. We have been seperated now for quite some time - but the pain is still fresh - as I talk with his mom - who is now his primary care giver, and as I hear about the next crisis that comes along I guiltily ask - when will it finally end. Our family is decimated by medical bills and he now has no insurance. Care involves the county hospital, which has wonderful doctors and nurses who now know him by name. My prayers are with you - BIG HUGS!!