Friday, August 12, 2011

Save the Flip


I am livid. I am trying to convince myself that things happen for the best, but it's a hard sell.

Flip's neurologist put him on Dilantin a few months ago for severe muscle spasms or seizures. One of the known side effects of this drug is confusion, not really optimal in an Alzheimer's patient, and his symptoms continued to worsen until I got his doctor to wean him off it. She then put him on Gabapentin, also known as Neurontin, which increased both the frequency and intensity of his seizures. The hospital doctors decided that since he wasn't improving, they would triple the dosage. It practically killed him, so I went to his neurologist's office and left her an urgent message. She had him taken off it immediately and ordered an EEG, which was apparently shocking in the amount of full-blown seizure activities it showed. She said the seizures couldn't be left untreated and put him on a third drug called Keppra, jump-starting him with an IV.

Meanwhile, the hospital's case manager had found a nursing home in Berkeley, which is a good distance from our home in San Francisco, especially in traffic, as well as an expensive commute with gas at $4.00/gallon and bridge tolls. I told Flip's neurologist of my reluctance to place him there, and she stopped by his hospital room yesterday on her way to the airport and wrote in his chart that it would be unsafe to move him over the weekend until it is known how he reacts to the new medication. She also ordered another EEG for Monday, which she assumed would buy me a little time to find another place. I arranged to visit the nursing home today anyway, and was about to leave when I got a call from the case manager.

He said they had discharged Flip and arranged for an ambulance to transport him to Berkeley at 3 o'clock. I asked about the EEG ordered for Monday and he said they were doing it today. "It won't show much," I said. "He's only been on the new drug for a day and a half and the last one isn't out of his system yet." "We're doing it anyway," he said. "I wanted to let you know." (Oh, what a good boy am I.) Deceitful turd. I spoke to a nursing care director recently who told me that she used to be a musician, too, but the music business wasn't mean enough. We agreed:Health care is.

I went to the hospital to spend time with Flip before his transfer, and the little creep case manager had his door closed, which is unusual as his room is really a closet. I'm sure he didn't want to run into me. (I have power.) The EEG was done in Flip's bed. I noticed that the abrasion gel hadn't been washed out from the one he had the other day.

The ambulance was an hour late, and it took me an hour and a half to drive there in rush hour Friday traffic. The place is dispiriting, to say the least. Flip shares a small room with an elderly gentleman who has a loud boombox. There are two small cubbies, both on the other man's side of the room, and his large easy chair and table block access to the one for Flip's things. I had packed him a suitcase and also brought a small CD player and some CDs including his own music so he can always remember who he is. There is no room for any of it. I didn't see a bathroom with a sink, only a toilet. I should have taken him camping instead.

His dinner consisted of a sandwich made of either stale bread or toast - it was impossible to tell - with a slice of American cheese inside. Dry. No mustard, no mayo, a small cup of unheated canned tomato soup - how much trouble is it to microwave it for a few seconds? and a "salad" of shredded iceberg lettuce with a dollop of bottled dressing. Dessert was a small cup of canned fruit. There was nothing with any nutritional value at all. He ate a little. I would have passed on all of it. They attach ankle bracelets on the residents so they can't escape.

I have to spring him. Realistically, I can't take care of him alone any longer, and our apartment is too small to have someone else here to help. But I can't leave him there. I just can't. I've told him he is there to recover until he's well enough to come home. I'm not exactly lying because I'm not committed to his being there for the rest of his life. If the place is better than my first impression and he ends up staying there, I will have to move to Berkeley. Then I'll be Heart in Berserkley. But it doesn't have the same ring.

In case my day wasn't perfect enough, I have no hot water. An unhappy plumber arrived at 10:30, but he can't get into the boiler room so it won't be fixed until tomorrow, at best. Sometimes I think God doesn't believe in me.




30 comments:

secret agent woman said...

Oh my God. There has to be a better place for him - there just has to. I am so very sorry - this sounds nightmarish.

(And fittingly, the word verification is nundead.)

nick said...

I'm amazed you have the calmness of mind to write a blog post. I'd be beside myself with fury and frustration. How can any health professional think such a ghastly dump could possibly be a suitable place for Flip to live in? Would they let their own relatives live there?

What a desperate situation. Of course you want to get Flip back home, however impractical that is, rather than leave him in such dehumanising surroundings. But I hope you can find some better solution. And I hope you can sort out the shambolic drug-prescribing too.

the walking man said...

So the doctor basically said leave Flip be until Monday and then do the EEG but some hospital ADMINISTRATOR changed the doctors orders? Sounds to me like hospital management got four square between the patient and the doctor.

I thought that had become against the law? Of course when it comes to the law money wins every time.

I don't know what to say except I hope conditions improve for you and Flip while he is in Berkeley. That someone somewhere gets it through their head this guy needs a caseworker without their head up their ass. Then finds him a place closer to you Susan and not vice versa.

That said at least BART runs to Berkeley, it was the lasts stop on my four year road dog walk a bout. where I stayed for nearly a year.

heartinsanfrancisco said...

Agent,

Nundead? How anti-Catholic of word verification.

Yes, there has to be a better solution. I am in shock. It's a complete nightmare. I also learned last night that the hospital didn't send any of the new medication with him, which is surely dangerous. There will be repercussions for them as soon as I can focus on that.

Nick,

Calmness of mind? Not really. I hoped writing would have that effect. It didn't. I've learned that most health professionals are not concerned with petty details like quality of life - it's all about the bottom line. Seeing Flip there will kill me if I can't fix it.

Mark,

That's exactly what happened. He got the attending doctor to discharge Flip behind my back, then informed me it had been done. It was deceitful and dangerous.

BART is not a possibility. The nearest stop is at Market St, we live in the Marina District and would have to take 2-3 buses to BART. And I don't want to move to Berkeley, but Flip doesn't want to be there either. I wonder what fresh hell awaits today.

meno said...

Oh honey, what a suckfest. The food alone sounds like enough to make anyone ill. I wish courage for you in order to find and implement a better solution. There has just got to be one.

heartinsanfrancisco said...

Meno,

I hope so. This set us back several steps, but that little shit case manager shouldn't have to power to determine where we live.

I wish I could bring Flip home. I feel as if I'm conspiring in his demise.

Jo said...

Oh, Gawd, Susan, just when you think it can't get any worse ... it does.

Have you contacted the original doctor who ordered him to stay until Monday? I would have a chat with him. My understanding is that he cannot change orders without your knowledge and/or consent.

Please move to Canada. We will take good care of you and Flip here, I promise.

I promise...!

heartinsanfrancisco said...

Jo,

Did you know that Flip's mother was a Canadian? I don't believe she ever became an American citizen.

Flip's neurologist of several years is out of town. She stopped at his hospital room (and notated his chart) on her way to the airport. I reported this to her office, and will definitely follow up on Monday or Tuesday, whenever she gets back.

This seems to me a grave breach of protocol.

Leight said...

You're not conspiring.. you're walking through hell on earth, doing the best you can, your emotions screaming outrage at every affront to Flip's dignity, just as they should be! Good job!!!

Molly said...

Oh Susan! So sorry to hear about this latest downward spiral in the hell on earth you're both going through....I agree with JO---move to Canada, or Europe somewhere. They may not be as "advanced" as the US, but at least some compassionate care might be based on need and not on ability to pay. I wish I could hug you failing anything else. Aren't there basic standards in those facilities? It doesn't sound better than a dog kennel.....

e said...

I am sorry for the hell you are going through. Unfortunately, this is not unusual in a medical/political system where money matters more than people or quality of care.

This is why everyone who steps foot in a hospital, rehab, or nursing home needs a sharp-eyed advocate who isn't afraid to speak up and fight for the individual who can no longer do so for themselves. Flip is lucky to have you. When you get done raising hell at that hospital and home, see a lawyer, then contact a social worker and see if he or she can recommend another placement.

Whitney Lee said...

I rarely comment but am hoping things improve. It sounds like you have so many balls in the air that you wouldn't have time for the guilt but I guess that's not the case. I hate it for you and for Flip. There has to be a way through this all; I am hoping it shows up soon.

I'm on Keppra myself but haven't been on all the other medications so don't really know how it compares. When I start it I get irritable (aka crazy bitchy) for a couple of weeks (I've started it 3 separate times). I don't know if that'll be the case for Flip but I guess it could. Just wanted you to know since if he is more agitated you might think it's due completely to the move...

Pam said...

Holding your hand through all this. It plays havoc with your emotions.
It is very difficult to deal with this sort of thing in Australia also, where we see money that should be directed into healthcare redirected and squandered elsewhere.
My daughter once worked in this area for a long time as an RN. Her ratio as the only RN on duty in aged care (with a handful of carers and EN's) was one to sixty patients. The doctor had a ratio of one to a hundred.
All champion the cause of "it is just not good enough", but the politicians continue on their path of self-interest.You won't find them eating tinned fruit salad and cold tomato soup!!
I feel for you.My Dad has Alzheimers and many of those dear to me are now in their mid 80's and struggling.
You need the strength of steel.

English Rider said...

The whole story is horrible. How hard is it to heat a bowl of soup? Did anyone verify that Flip could feed himself? Can you get a Nanny-Cam that will capture what goes on when you are not there? I'm sorry that you are being swept along from one worry to the next.

Barb said...

Hello Susan, You are Flips's only fervent advocate. The medical maze is becoming just as untrustworthy/unreasonable as the political one (or perhaps they're one and the same). I hope you can find a way around the inefficiency and ineptitude.

Tanya Brown said...

Holy crap. I'm so sorry.

Okay. Well, he isn't in an environment where you want to leave him, long term, but he's at least safe for now. If nothing else, that'll buy you a little time to rest and look at the various options.

heartinsanfrancisco said...

Leight,

Thank you for your kind words.It's painful to be helpless against this disease which destroys everything in its path.

Molly,

I've seen some pretty classy dog kennels. This is not one of them.

e,

I will. I also intend to press charges against the hospital, especially if I can enlist Flip's wonderful neurologist to add her voice. It should be mentioned that I have nothing but praise for all the nurses who treated Flip as they were wonderful. Nursing is truly a noble profession.

Whitney,

Thank you for the heads up about Keppra. I'm sorry you have to take it, though. I'm sure I'll be able to work out a better arrangement - I just hope it's soon. I also miss Flip very much, even when I'm with him.

Pam,

So sorry to learn that things are not better in Australia. You seem to have an enlightened government, but I guess health care is being diminished everywhere as politicians find other uses for our money. It's a very sad commentary on the world's changing values.

ER,

If this is some grand cosmic scheme to build my character, I think I have about as much as I can handle now. the nanny cam is a good idea in theory, but his room is so small and bare that there is no place to hide it. Keep thinking, though. Please.

Barb,

More than the inefficiency and ineptitude,I am troubled by the plain meanness and lack of concern for Flip's wellbeing shown by the hospital. It makes a mockery of the whole concept of hospitals as healing,caring places.

Tanya,

You are so good at finding the one positive in a sea of negativity. Thank you!

mischief said...

Seriously, straight up the coast to BC. Please come. I'm so sad that you are having so much to deal with right now. You both deserve happiness, and I hope it returns soon. xx

lgsquirrel said...

Oh, Hearts. I have no words for the terrible experience that you and Flip have been going through. Flip, though,is fortunate that he has you looking out for him. But I hope there are those that you can lean on for support even as you have to be the rock that Flip relies on. You have had to face a system and some people who are lacking in basic goodness and compassion but there are good people out there. Likewise, I believe that if you do turn to God, you will find that he has been there with you all the time.

TechnoBabe said...

Berserkley it may be. You are doing the very best you can do. This is horrible and I don't know which is worse; your situation or Flip's. I believe you will find a better place, at least I hope so. I am selfishly glad you have time to write a post so I can know what is happening. Hugs.

heartinsanfrancisco said...

Lisa,

I'm very sad about all this and would really like to post something funny, but it isn't in me right now.

Calvin,

There are many good people, I agree, many of whom read this blog. Somehow we'll get through these challenges.

Babe,

Writing is my therapy, but it's good to know you're all there, like the boats that accompany English Channel swimmers.

neora chana said...

Molly,

I've heard many such stories and feel lucky to live in a state that well-publicizes it's long term care for elders and people with dementia.

I did look at State of California and Medi-Cal websites. There is an ombudsman program that oversees nursing homes and you can file a complaint with them if you wish.

There were some other times that may be worth following up on, but not knowing more about your situation, I'm not sure where to help with this. If you would like to have it here so maybe it would also help others, fine. If not, maybe in e-mails?

heartinsanfrancisco said...

Neora,

Thank you for your advice. There is also an agency called CA Advocates for Nursing Care Reform, but I'm not sure I have need of their services, whatever they are, at this time.

Susan

Maria said...

What incredible strength you have. I would have been railing and screaming, thus making the entire staff detest me.

That case manager needs to be tarred and feathered. What a pee butt. And they all seem to gravitate towards positions of semi-power, ie cops, case managers, loan officers.

I think it was the cold soup that tore my heart out. That is just...horrid.

Have you found a place yet? I wish I knew someone who knew someone who knew someone. Having contacts is everything, yes?

I hope that your hot water is back.

Please keep us posted.

Bob said...

Words fail me. I cannot image what you must be going through.

My heart goes out to Flip - and you, of course - for having to suffer these indignities. I cannot understand how anyone could in good conscience do this to anyone.

I am so sorry.

mrwriteon said...

Of course you must find him a better place, as you are indeed doing. Why are we so shitty in the way we treat people so afflicted. Your tale is something out of Dickens, and it's 2011. My heart so totally goes out to you, Susan and may you find an agreeable place.

seventh sister said...

Oh Susan, I really, really hope you find a better placement. I know you will give the hospital administration the hell they deserve. I would certainly talk to the doctor who ordered him not to be moved over the weekend and see if she can do anything. My heart goes out to you and to Flip.

We were in NC this weekend for Stephen's mom's 8oth birthday. Flip was asked about and all of Stephen's family send you their love/

PeterAtLarge said...

So sad, to read your entry. What a nightmare! And how alien to all that's humane our health care "system" has become. It feels inadequate to be sending you wishes for a better outcome, but it's all that I can do. Don't forget, too, to take as good care of yourself as you take of Flip...

heartinsanfrancisco said...

Maria,

My hot water is back. Small pleasures. New situation, new post. I keep meaning to write a light-hearted post for comic relief, but right now, this is what I have. We write what we know.

Bob,

When you're in need of help is when you learn what other people are really like in their hearts. Most are wonderful, and then there are the others.

Ian,

Thank you so much. I'm sure I will, even as my heart breaks that it's necessary.

I haven't visited anyone's blogs lately as I'm rarely home, but I miss you all.

Jackie,

I did talk to Flip's neurologist, who is predictably incensed that her orders were disregarded and her patient endangered. She is going to lodge a complaint against the people involved, and I'm happy to have her handle it.

How nice that you were in beautiful NC! I liked living there in most ways.

Peter,

Think of the seeds they're sowing and shudder. Sometimes I think our government has lost its humanity, but most of the people have not, thankfully.

Wanderlust Scarlett said...

I believe in you.

Whole Heartedly.

And I'm an angel, so it counts.

XOXOXO

Scarlett