About Me

My photo

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.

Tuesday, December 8, 2015

Now what?

Riley had a saying that went something like “When you’re up to your arse in alligators, it’s hard to remember that your prime objective was to drain the swamp.”

That’s exactly how I feel most of the time. With all the responsibilities of being Riley’s caretaker, sometimes I lose sight of my prime objective. I actually, I seldom can remember what is my prime objective. I seem to have many and they seem to change from day to day. Maybe my objectives are layered like a pyramid.

We have received the official notification that Riley WILL NOT be entering the Veterans Hospital as a hospice patient. I don’t understand all the whys and wherefores except that his lab results are not showing any abnormalities in his liver function.
That’s all well and good, but his diagnosis has nothing to do with his liver anymore. He has encephalopathy which although began as HEPTATIC encephalopathy is now continued on its own without the hepatic part. There are no lab results that would ever show this kind of encephalopathy or dementia. The only proof positive test for that is a brain biopsy which cannot be done until the patient is dead. Once he is dead, I won’t need for him to be placed in a nursing home.

So it appears that I am and will most likely always be Riley’s caregiver.  It’s really not that much of a surprise, but there was a comment that got my dander up. I told the VA social worker that I truly felt I would die before Riley if I cannot get placement for him. Her response was to make sure I make arrangements for him to have a place to stay after I die. HUH? I have news for her – no one is going to take care of Riley after I die. I’m the end of the line.

I regret that my moral conscious will not allow me to just send him on his way. He cannot walk, bathe, prepare his meals, or even communicate his needs on most days. If he were dying of cancer I would not turn him or anyone else out. It doesn’t matter anymore how he got here – the fact is he is dying.

Now what? I don’t suppose a temper tantrum would change anything. Better stick with something more productive. Respite.  I can get five days through the hospice company and I’m going to go for it. I’ll also apply for respite through the VA which will give me another 10 days. 15 days should get me back on a starting track for my own health.

Some rest and relaxation would be very beneficial. A couple of days in a nice hotel with beautifully clean sheets, room service and an indoor pool would go a long way to rejuvenating my spirits.  However, I also feel that I must manipulate the budget to accommodate an aide on a regular schedule. There is no “extra money” in the budget. It’s like leftover lobster – there is no such thing. Unless my followers want to donate some money for a get-a-way for me (click the DONATE button) 

things will remain the same.

Last night, as I lay in my bed contemplating my ongoing caregiver role and having images of a frog trying to get out of the soup pan, I did manage to come to one conclusion. My life is complicated and it is in my best interest to UN-complicate some things. I have dropped my idea of hosting a seminar series opting instead for simple presentations to certain groups of interested persons. I’m hoping I can offer the presentations at no or very low cost. People will have the opportunity to buy my books and products and write reviews.  Of course, I can’t even do the presentations if I can’t get my health issues resolved. I really hate “catch-22s”.

On a brighter side, Sandy James is doing really good things. She’s finishing up a book called The Primer. Be sure to watch for it sometime in January. It will available through Amazon. She will also be joining me on the presentation venues. The two of us together present very interesting points of view.

Just for the fun of it – check out the new survey in the sidebar. Your opinion maters to me.


JBthatsme said...

Hi Linda, I was happy to see a new post when I came to check yesterday. I don't know how you find the time, but I'm grateful that you do. As for the Now what's? I am going thru a different stage of the same. As I mentioned in my previous (and first post) my father passed away last month. There's no list of the order in what to do / take care of first after a loved one passes (or at least I haven't found it), except to wait until the death certificate comes to do anything with regard to the deceased accounts, bills ect. And that was after feeling that we were taken advantage of by the funeral home / arrangements. I don't appreciate the attempts at guilting us into upsales. I don't need 100 memorial pamphlets (so I could have 80 sitting around, because I would feel bad throwing them into the recycle). But when you don't have a plan, you ends up just rushing to get it done (be advised to plan ahead). So once the death certificates were in hand, and attempts to close accounts could start, accounts were already over drawn. However this provided me with a lovely opportunity to unleash me anger in a somewhat deserved manner, "no, car insurance company! You took out the payment for this next month this morning and that over drew the account, he passed away weeks ago and he's not driving. I need you to put that $ back in the account, so it's not over drawn and I can close it! Response "I don't know that we'll refund that money". To which I said oh yes you will! What made me more angry perhaps than my own situation is thinking of all the older couples who have to deal with losing their life partner after decades of good relations, who get told the that's the way it is deal, no we won't be refunding it, and they take it. You shouldn't have to pay for something once the person's gone and won't be using it. While i don't like the hassel, its not right and I will stand up for that. And As the holidays are upon us, I have recognized that I'm not being invited to holiday parties by co-workers and friends. I'm pretty sure the reason is because they all plan on drinking themselves stupid, and my presence may ruin the buzz, since they are aware of my absolute hatred of alcohol. I must compliment you again on your strength Linda, and I wish I was in a place to be more giving, but money's tight for me as well. Blessings and Peace to you and yours!

Suffering in MD said...

Oh Linda. I keep hoping that Riley will just let go so you can be relieved. You have done so much for him, and for so many of us, but you need the relief. "He's killing me" is actually a phrase I use more and more and more in my own experience. My husband is so brain damaged--horrible judgement, faulty memories. His physical self is repulsive and sad. He is 53 and looks 93. His stomach has that pregnant bloat. His feet and lower legs are swollen. He won't shower until we make him. He thinks he can do things he cannot and then he gets hurt. The children and I are at a loss. I find myself sad and so so so angry most days. I wanted to care for him until the end, because so many doctor's said it wouldn't be long, but here we are 2 years post massive hemmoragic stroke--he drinks more than ever--he cannot go without it (or we have seizures). His right side doesn't work anymore. He has lost control of his bowels. The kids and I are so lost and confused and have absolutely no help. None. I don't know what to do. I don't know what the answer is. I don't know that keeping him in the house is the right thing at all, but he also sees absolutely nothing wrong with himself and refuses all attempts at getting help. He has no idea what a burden he is on all of us. What an embarrassment he is when he insists on going to school events or neighborhood events. We've lost so much, all because of him. And IO read your blog and I find comfort in knowing I'm not alone, but the pure terror if knowing how long this could go on???? Full panic attacks-- and thus the "He's killing me."

Gerry said...

Dear Linda, I hate to see you in such a bind with Riley's care. I felt quite desperate as I could see Doc was dying and asked to be taken off his next of kin because what I dreaded more than anything was being left in charge of all his stuff in his apartment after he was gone. He said he had taken care of it, but of course it turned out that he hadn't. He stayed on his feet until the last couple of days, so I was very surprised to come in and find him dying after he had only been bedridden a day. I don't know how he managed to do it (die) with so little fuss and muss, but dealing with his dirty apartment after he died was practically a killer. I caught a virus with my immune system under seige and had a near death experience in which Doc's spirit intervened believe it or not. I had been coughing constantly for several days and with chronic fatigue was starting to get very exhausted. Doc came in and clearly said to me hold my hand between coughs so you can rest, and so I did. I was far gone enough to feel his hand and managed to rest a few seconds while I was holding it. I only gradually became aware that Doc's hand in spirit was stronger and healthier than it had ever been in life since I had known him. His body was already very impaired when I met him with the most severe erectile dysfunction I could imagine. In spirit he was healed. I held his hand long enough to feel what had been returned to him in the spirit, so this gave me so much hope and joy. He was a long time in healing but he had healed. I know Riley will not be able to overlook your caring for him as you have done and so you have become part of his healing. He will heal, never fear, but let us hope that you will survive his passing, Linda. That is my sincere prayer for you. spare her, God, so she can do more for the benefit of all those so affected by alcohol.
Love, Gerry

Anonymous said...

I read your blog and I think of myself. I tried to get my husband formed 2 to place him in a nursing home. I was told they can not place him there because it is all alcohol related despite the fact that he is incontinent, memory is failing(does not know day and night) but he still can walk to the liquor store to get alcohol. Most days he spends either in the hospital or jail (drunken and disorderly in public). Broken back, quadruple bypass surgery, broken ankles, strokes and broken ribs all caused by his numerous falls.
The hospital telephones and wants a history on him, as if the file is not large enough all ready. Want to say nothing has changed from yesterday when he was in your care.
Today, I have learned to detach from his drama and focus on me. I am truly learning that he has a Higher Power who will take care of him and so do I. I focus on me and enjoy my life to the fullest today.
I spent to much trying to get my husband sober, something he does not want nor do I have the power to make anyone sober.
My prayers are for everyone living with an alcoholic, focus on you and let go and let God (Higher Power).

Janice Stroud said...

I was googling cure for wet brain and found this blog. My estranged husband decided to detox on December 3rd. He checked himself into the local hospital and was put into ICU. We've been separated 22 years so the daughters let me know. I went to see him the first 3 days, skipped 2 days, saw him once they moved him to the regular nursing floor and he was extremely confused and couldn't walk. I don't know why, but I immediately told the girls and the nurses I thought he had wet brain. The hospital discharged him to a physical therapy hospital on day 6 of Detox but he was so confused and combative after 2 days the night nurses called the police and they had him escorted back to the hospital where he went back into the ICU.
At that point none of us saw him for 9 days. My youngest was graduating finally with her BS, I had relatives coming in from out of state and between work, the graduation, trying to do some holiday shopping, his well being just wasn't a priority.
I feel a little bad about that. I loved him so much once upon a time and although I gave up hope he'd ever stop drinking and drugging when I walked out the door in 1993, for the kids I always would say maybe someday....
I'm not sure what is going to happen at this point because he lived alone in one of those senior apartments up until this happened. He's confused, combative. lacking motor skills to walk or feed himself and incontinent.
Anyways I may follow your blog for a while so I can get better informed. I hope your me time you have planned is rejuvenating. I'm thinking you probably really need it if you've been his caregiver since 2011