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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, July 21, 2012

Outwit, outlast, survive...

I should have expected that something weird would happen on Friday the 13th. But, I’ve always ignored the connotations of bad luck and simply gone on about my business. I didn’t see why this Friday the 13th would be any different. In fact, I had planned the first ever public OARS meeting for that day. I figured that it might be a bad day for caretakers of end-stage alcoholics and that they might need some extra support. I was not prepared for how my day would go from a personal point of view.

The day before 13th, I had received a phone call from the hospice nurse informing me that Riley was going to be removed from the hospice program because he appeared, physically, to be improving. In order for him to stay in the program, there had to be a decline in his condition. There was none. However, hospice does not do lab tests. So they really could not determine that Riley was dying from end-stage liver disease. All they knew was that he was not as yellow, eating well, and generally had a good attitude.
I asked what that meant to me. What would happen next? I was informed that Riley would stay in the nursing home. Nothing really would change except he would no longer be under VA’s hospice care program. OK. That was acceptable to me. I didn’t see a problem.
On Friday the 13th I received a call from the business office of the nursing home. A very pleasant young lady wanted to know how they should proceed with the billing of Riley’s account since VA would no longer be paying for him being a patient. The daily cost will be $250/day which comes to more than $7,000 per month. I was a little taken back, because I thought VA or Medicare would be paying for his continued stay. No. VA doesn’t pay for any custodial care. Neither does Medicare nor TriCare. The only way to keep Riley in the nursing home was for him to be admitted to the hospital for three days. Upon his hospital discharge he could go directly back to the nursing home. The only problem is that there is no viable reason for Riley to be admitted to the hospital.
I explained that I am not physically capable to taking care of him. What would happen if I just didn’t come get him? The answer was that they would keep him, but they would start billing me for the $7K each month plus incidentals.
There had to be some other options. People have elderly family members put into nursing homes all the time. How did they do it?
I was advised to apply to Medicaid to try to get some assistance. But, I’m sure I make too much money for that type of aid. Then I was told that if I used the Medicaid option, all of Riley’s income would go toward the nursing home. I would be left with only income that I had separate from Riley. Well… since I’ve retired, that would leave me with only my Social Security. While I know that people live on less, I didn’t see how I would be able to pay my $1100 rent and my utilities with my $1200 per month. This did not seem like a viable option.
My next step, in the panic of realizing that Riley may in fact be coming home, was to start making phone calls. I tried everywhere in the Veterans Administration but it was Friday and all my calls were going to voicemail. I tried Medicare. I got a real person but the info provided was what I already knew. I called Medicaid and again there was no new discovery there. This Friday the 13th was not turning out very well for me.
Images of me trying to get Riley into the van, out of the van, up the steps and into the house was more like a slap-stick comedy. Then there was the issue of not having a bed for him since I had gotten rid of the feces and urine saturated bedding long ago. How would I tend to his personal needs and still keep myself safe? I wasn’t sure and no one had any answers.
Late in the afternoon the hospice nurse called to tell me that they had decided not to discharge Riley until Friday of the following week. I breathed a huge sigh of relief. I had a week reprieve. Maybe I could get some help from someone.
I walked around the country house and saw all the boxes I had packed in anticipation of moving closer to the kids. I beat myself up over not listening to my gut instincts. I knew deep down that Riley is immortal. I didn’t truly believe that he was never coming home no matter how many times I had been told those words over and over again. Even when I gave my landlady notice, I had a little twinge in my stomach that something was just not right. I went ahead and made plans and proceeded to act on them.  I convinced myself that I could trust the medical community and move forward in my life. After all, more than five med pros had told me that Riley would be in a nursing home for the rest of his life.
The following Monday I was back on the phone again. I talked to the head of the VA hospice program for our area and even she was confused as to what had happened. She requested his records so she could review the decision. In the meantime, she told me to prepare for his homecoming but that she would not allow him to be discharged until the last day of July. I told her that if he comes home there is a good chance that I will die before him. I asked her what would happen to him then? She had no answer. I mumbled something about how irritating it was that my life is expendable in order to save his – a life that he clearly did not want.

I’ve called the Senator’s office again and they are trying to rush through Riley’s disability application in order for me to have the funds I need to hire a personal care aide. The VA has provided me with a hospital bed and wheel chair. I just found out I can also get other items I will need, like ramps into the house and van.
Today I will send an e-mail to my landlady and ask if I can stay another 30 days at this house. My plan was to stay with the kids for a while, but there isn’t enough room for both me and Riley. And I don’t want Riley around the small children. If my landlady does not agree – I don’t know where we will be living. If I can stay, I’ll have 30 days to find a place suitable for the two of us in the same town as the kids. It will have to be a cheap place because the cost of an aide will quickly empty what is left of our shrinking bank account.
As with every difficulty in my life, I always find a way to accomplish what needs to be done. Sometimes the way isn’t pleasant or what I want – but I survive. I know that the odds are against me right now. I know my health is not where it should be to take on the task of caretaking Riley. I know I’m in danger. Knowing all that means I must do everything I can to make sure that Riley does not outlast me. I am digging through all the packed boxes and looking for my “survivor hat.” I know it is in here somewhere…

17 comments:

Anonymous said...

The more I read your blog the more I feel for you. I really wish you some peace for yourself, I see it's just the simple things in life you wish for. I am familiar with a couple in the same situation and I hate to say it but I am wishing it will all end soon, for the carer. She has lived with the shame and the torment of it all her life. Alcoholics are so so selfish. I hope you find peace

msterfun said...

Dejavu! My father is the first and only person to leave our hospice's house without a sheet over his head. The nurses were so proud of him. To think they helped a man who was littereally 12 hours from death to making as full a recovery as he did, really filled them with hope. My dad was the proudest man on the planet. My brother and i however just waited for my father to do what he does best....get drunk and screw everything up around him.

12 months later, im sure the nurses were crushed to learn of my fathers return to his ways. His dui arrest is public record, his dishevelled stumblings around town on full display. My brother and i now proven right laugh while fantasizing on the phone of him stumbling drunk into traffic orfalling down the stairs because there seems to be no end either for our own immortal.

Linda, what about just getting riley an apartment or house of his iwn and letting him take care if his own affairs? Then you could move closer to your family and farther from the problem?

Immortal Alcoholic's Wife said...

It has been documented that he doesn't have the mental capacity to take care of himself. Legally, I'm responsible for him and could be held accountable as to neglect of an elderly person. I'm walking a very fine tightrope these days. -- Linda

Anonymous said...

My brother in-law, a former NFL football player died few days ago from liver disease. He started drinking in the mid to late 90's after he retired from playing football. He was 51 years old, 6'8 and 275 lbs. He went down quickly compared to Riley. Riley is truly immortal.

Anonymous said...

If you got sick then who would look after him? They would have to take care of him then.

Anonymous said...

@mstrfun - same as that the falling around the roads, out at 5 am looking for a pub to be open. Drink at home isn't enough - has to be going to a pub making a fool of himself and embarrassing the family. Been like this on and off for years. But keeps bouncing back for more after hospital stays and rehab etc. When will it end!:(

Kitty said...

I'm so sorry you're having to deal with this. I hope my drinking never escalates to where I will put this type of situation onto my husband.

Anonymous said...

Have you considered divorce?

Jackie said...

In past posts I have mentioned divorce as a goal for the non-alcoholic and his/her children. There may be a small window when that can be accomplished. My suggestion is when the children are very young before they live in that environment for years or when they are older teenagers. At that age they can understand the reason for the divorce. Too bad there was no divorce when your children were very young or teenagers. The living and legal problems would be his and his alone. I would pretty much guarantee that the children would not take on that responsibility after living away from their father during their formative years onto adulthood. They too would feel the peace of living apart from him. There would be no concern that his children would pay for his care either. I don't think they can be made to accept that responsibility. Just tell them to never sign any papers for him for any situation. Accidentally signing forms which would place them responsible for health or financial care. My suggestion to families is to divorce and work on ways to accomplish that goal. The 'young spouse/parent' can't see the type of future they may endure if they stay and stick it out.

Your story is: Their future. Their life. Their outcome. This will be their existence when they don't find a way to divorce and leave whenever possible.

Linda, you have been in prison and you're still in prison. The way out has come and gone and passed you by. It doesn't need to be that way for the younger generation with children to have that fate. Get that divorce as soon as possible. Get that help. Start forming a strategy to make that happen. Hide money, get a job, form good friendships, join a church for spiritual and emotional growth, ask other family members for help, seek women's and children's centers when and if you leave prior to filing for divorce. Make a plan and work on it. You may have happier days ahead just by doing things to reach that goal.

msterfun said...

Linda, that is a tight rope. Its too bad people can leave helpless babies at hospitals and fire stations around the country but there is no place to leave an alcoholic. There should be alcoholic recepticles around town, maybe at the community recycling cente. Lol

Oh, wait! I'm imagining their own island.... we can leave them there and have supplies dropped off. Immortal island. Yes, and riley can be president and live in the capitol stupersburgh. My dad would find a place out of the way on the edge of the town of filthyville or ungratefulland where he could wander around letting whoever will listen know how great he is.....

Oh wait, what? Sorry i was day dteaming again

Immortal Alcoholic's Wife said...

Thank you, all of you. I AM listening and I WILL address all the issues -- divorce, etc. in future posts.

Msterfun -- My OARS group has agreed that the planet Mars would be the perfect place to ship the alcoholics!! We often go off into your fantasyland and we love it there! LOL

Ms Kay said...

Oh boy . What a situation

Is riley compos mentis enough to have an opinion on this . Does he intend to start drinking again ?

I imagine if he does then the decline will be more rapid next time ?

I hope someone comes through with some help for you . X

Ms Kay said...

I suppose ......sneaking into the hospice in the dead of night and whacking the immortal alcoholic on the foot with a vodka bottle to secure him a 3 day hospital stay ..... Would be out of the question ??? Lol

Anonymous said...

"People have elderly family members put into nursing homes all the time. How did they do it?"

They PAY for it.

It appears you want to have the alkie's pension check to supplement your SS income so you can live without working or taking care of the alkie and then have the government (meaning me the taxpayer) pay for the alkie's living and medical expenses. It does not work like that. The alkie goes with the pension check. You want his pension check... you get the responsibilities and the bills for the alkie's living and medical expense. Any nursing home, caretaker, or hospice that accepts the responsibilities for the alkie will get paid. Of course you are going to get billed for expenses. There is no fantasy money tree...for you or the alkie.

Since the mind is not a physical organ, it cannot have a disease. A disease is something you have, behavior is something you do.

Hope you find whatever it is that you are looking for.

Tonya said...

Anonymous, How sympathetic of you, what the heck?

What a stressful situation. I can not imagine. I am a recovering alcoholic. I don't know what my family would do if I was in your husbands situation. My husband wouldn't be able to afford a nursing home for sure. At the same time, he married me and it would be his responsibility, just as when I married him, with him came debt from his previous marriage. But I wouldn't want him to go through it though, or my kids. I don't know how other people do it either and I don't agree that they all PAY for it. So many low income families have to put there parents in homes. I wish you the best during your difficult time and I sincerely hope you do find an answer.

jo said...

linda, check medicaid eligibility. we actually are under it,which i didnt expect. its changed. you may fit in it. i believe its 40,000 and something for a couple.

most use medicaid with rest homes. they are around 5-7000 a month. yes, and insurance wont cover it and medicare wont. but yes, they will take his check. all but like 75$. its worth it to have him taken care of.

a in-house care person isnt gonna be what you think.most refuse to do a lot..and you will end up with doing it. dont bank on having that. you will still work yourself to death. seen that one before.

with any help at all, they bounce and show us their immortal while killing us along the way. im not surprised. i expected it. never call 911 if their concious. sounds cold..it isnt. besides, the ER will just kick them back if they are talking their usual crap.

i suggest a public rest home if you qualify for medicaid. dont take him back.

did you sign as responsible party? NEVER do that.(i thought you were no longer married) if you did, yes, they can bill you. if not,,they would ship him elsewhere. their after you because you are alive and can pay. its a common ploy. they will try to guilt you into it.

good luck. im not surprised. i firmly believe they can rise from the grave. seriously. by now..i expect that to happen. mine will be cremated. i take no chances.

jo

Syd said...

My parents in law are paying out about $10 K a month between the nursing home and the caregivers. Luckily, they have enough money to last for a while. But after that runs out and if they are still alive, then Medicaid would step in. But Medicare will only pay for so many days in a caregiving facility. The rest is paid for by the person or family. And the system will be stressed to the max because of the ever increasing number of elderly people who are living longer. It will be a crisis soon, if not already.