Thursday, September 01, 2011

Hell on Wheels

I would like to reward those of you who have stuck with me through these depressing blog posts with one that is all fluffy and hilarious. But that is not going to be this one. Flip was discharged from the third hospital this afternoon and transported to the third nursing home, one I had visited a couple weeks ago and disliked because it's bleak and smelly. It was the only one in the Bay area which would accept him, but I am holding my breath as he lasted only three nights in the first and two in the second. I am braced for The Phone Call which tells me that he has been taken back to the hospital again. With an armed guard.

If that happens, they will quickly discharge him and absent another nursing home, I will have to bring him back to our home which at this point is not safe for either of us. There is also the fact that if he comes home, MediCal will revoke his approval and refuse to pay for anything, nor will he be allowed to reapply. Much as it pains me to say this, our life will not be tenable at all with me caregiving 24-7 in our small apartment as I did for so long. The disease is advancing at a shocking rate.

The first thing I was asked upon arrival was whether I had selected a mortuary. So much for sensitivity. Since the answer was no, Marlene, the admissions woman, asked if she could write in the name of a local one because the form required something on that line. I shrugged, and she assured me that she could change it when I found one I liked. Question: Does anyone like mortuaries? Auditioning funeral directors is not high on my to-do list. I said that Flip and I had discussed burial and cremation over the years and we both leaned toward cremation. (But that doesn't mean I ever expected to do either of those things. It was just a philosophical discussion, that's all.)

There was an Inspirational Hour going on in the main gathering room. A man was standing on a table loudly hawking Jesus while other residents mostly snoozed in their wheelchairs. "Oh, Jesus," I muttered. Sometimes I wonder how enduring tasteless and predatory behavior in his name all these centuries compares with the agonies of crucifixion. The answer could surprise us.

As I sat in Flip's new room with him, a harridan in a wheelchair rolled up and began to scream at me. The old biddy knew every word for female genitalia and wasn't afraid to use them, so I shut the door. She slammed it open and I shut it again. Open. Shut. Open. Shut. All accompanied by a stream of invective that would have made a sailor's parrot blush. Finally, I leaned myself against the door to hold it shut and she rammed it with her wheelchair. I was definitely in the wrong weight class. Nobody came. Flip looked unbelievably weary, and I knew he was sure he was either in a nuthouse or in Hell. I yelled down the hall, "Can I get some help here?" and about ten minutes later, Marlene returned with more forms for me to sign. All business, that one. The old hag began to curse her out, too, demanding that Marlene take off her dress because it was really hers, stolen this morning. I closed the door again and told Marlene that I was concerned the woman would give Flip a rough time when he is already going through so many changes, including another new place. "Oh, she hates females," she said. So comforting.

And that was our welcoming committee. They really went all out and the entertainment was phenomenal, but there wasn't any cake. There should have been cake.


Molly said...

Dante's inferno pales.....Do they routinely throw people out on the street in California? I boggles the mind that you can find no-one to help. Prayers maybe.....

Molly said...

"It" boggles....

Taradharma said...

oh lawd, not only should there have been cake, but little finger sandwiches, too!!

I am dabbing at my brow and fanning myself -- the black comedy of this post is - pardon me - to die for.

I cannot imagine the stress and horror you and Skip have been through -- I believe it would have done me in a long time ago. I trust you are getting some major emotional and psychological support to help you through this. You get the "Tough as Nails" award for the year, m'dear.

Sending out big giant HUMONGOUS cyber hugs to you!

heartinsanfrancisco said...


Apparently they do throw people out. The case manager at the hospital assured me that I was very lucky this place would take Flip because many other people are living on the streets. It's obscene that anyone with a horrible disease should be thrown away like garbage. When I have time, I want to work for change in the system. It's badly needed.


Finger sandwiches? In that place? I don't think so. Ditto on toes.

What kind of emotional and psychological support do you mean? And where can I find some? I know that some people care but don't know what to do about it - still, it helps to know they care. I'm not tough as nails. I just want Flip to be treated with respect, and kindly, and I am not winning any popularity contests.

neora chana said...

I can only shake my head in horrified sympathy. Do you need an attorney? Is there an agency--in WI, we have a group called SeniorLaw that provides free or no-cost services--you can go to for help? If it wouldn't remove you from all that is familiar, I would say get yourself and Flip to a different state. I know it doesn't have to be this way. But I'm proud of you for recording and sharing this. Maybe it will do some good...

Anonymous said...

Is Hell on Wheels the sister franchise of Meals on Wheels? I try to be understanding......perhaps said woman is a frustrated ex-Hell's Angels groupie. She's used to two wheels but with way more horsepower driving it.

Anyway,Hearts ..... am remembering yo in prayer and sending you good vibes, asking that you encounter more angels and less witches on wheels.

meno said...

Squirt her in the face with a water bottle.

What? It works on my cat.

Seriously though, what a fucking mess.

nick said...

Hell on wheels for sure. The whole situation you're in is horrific. The people at the top busy dropping bombs on God-knows-where while their own citizens are struggling to find proper care for their loved ones. Poor Flip having to endure this awful shambles - including screaming biddies and indifferent form-fillers.

About time the passionate Bible-hawker tried giving some practical help to long-suffering people instead of spouting sanctimonious nonsense.

secret agent woman said...

It seems like the situation with Flip's care has moved past grueling and into terrifying. I can't even imagine what happens if you get that call. And I don't understand how the medicare program can revoke his pay if the nursing homes throw him out. That's insane. Does he have family other than you who can shoulder some of the burden?

TechnoBabe said...

I just hate that you have all this to take care of and that it just gets worse. All I can do is tell you I care. Since I spent so many years in CA I know how the system lets you down. And there are so many people on the street who are too ill to care for themselves. You of course know all this only too well. Keep posting and some day these posts may help when you are in a position to fight for change.

Maria said...

There MUST be a way out of this hell. I know literally nothing about rules/regulations in your situation, but there has to be an answer somewhere. Is there a site for Alzheimer's caregivers that might help? Shit...late for work. But, I will look into this later because this is not just nonsensical, it is downright hellacious and there must be a beacon somewhere. I'll look, you rest.

the walking man said...

Susan the form filler is just following required protocol. A little to impersonal for my taste but just another paper pusher. Asking about an advance directive (a legal form that details what to do at time of death and how to handle whatever arises as death approaches)is a pretty standard question in every medical situation.

Mine says try to resuscitate for 15 minutes and then life support for thirty minutes then look in my wallet and there is a card for Wayne State University school of Medicine with a number to call for them to come and take what was once a part of me back to the school for student use. That is something my family has always done.

I really like the idea of running to Oregon but a blogger up that way went through the same issues of constant changes in nursing homes for her mother because of one thing or another. A temporary move to a smaller CA town may be a better idea if you could afford it, smaller place = less indifference.

My wife works in an assisted living facility where they are not supposed to but do put dementia patients and to be honest from what she tells me either the staff is overwhelmed by being short handed or they just flat out do not care.

But that is neither here nor there nor a solution to what seems an increasingly worse situation. As tired as you are I think it is time to start making calls to Sacramento, bugging the hell out of every department that has anything at all to do with public health and nursing facilities as well as ol Jerry's office. Make a nuisance of yourself, be the squeaking wheel and start those over paid bastards to working on the needs of a constituent.

My guess is that any one of them with a phone call can get the place in SF nearest you to accept Flip now that they know which drug makes him combative ...hate tosay this my friend but now it is time to fight the power, now when you are tiredest of war, because now it counts for you personally not later when it helps others.

Enlist the aid of every Californian you know to send emails and make phone calls short, become a HUGE PAIN IN THEIR ASS!!

Bob said...

like meno said: what a fucking mess.

Whatever hope I can find, I'm sending to you.

Take care.

Pam said...

I came back to check on how you and Flip were faring. I'd missed about four posts. Sounds so heartbreaking and stressful.
Seems like you are all operating on the fight or flight stress responses and,if you personally, were offered gentleness and genuine loving help quite suddenly and in abundance, it would be the final straw emotionally and end in floods of tears, not only of relief, but at the unexpected sympathy from the health sector!
Congratulations on managing to hold it together through all this.
Good luck with the dear cat. My daughter has gone to live in Germany so we have hers also.
It adds to the tears too, when our loved ones are away and we need their hugs. Cats are choosy if and when they offer such affection, but hope it's presence helps!
Please, please continue with your "can and must do" attitude and wry humour. It all helps with grieving and anger, as does a good cry, if you can face the world with eyes that look like "piss holes in the snow" as a friend of mine once put so eloquently.

Pam said...

...also wanted to say it is like this in Australia too unfortunately. Many on the streets who shouldn't be and facilities underfunded and understaffed. Plenty of money always though for the politicians and their special interests.

mischief said...

I keep wanting to tell you to move here, to Canada. But I guess I don't know if we're any better off here than you are. Until you try and access these services, you don't really know if you have them or not. I wish you had never had to find out how bad it was in California. If you lived here I couldn't promise better health care, but I would make you tea and sandwiches. x

heartinsanfrancisco said...


I am writing these posts because it seems important to bear witness. Perhaps I will become the Elie Weisel of nursing home reform.


That woman's dementia has taken a very unfortunate turn. But she is just what we don't need at this time.


Yes, it is a fucking mess. Bar none.


I quite agree. It is ghastly that we are forced to support endless wars against people in other countries while those at home suffer increasingly in numerous ways.


Flip has a brother. You must have missed my post "What Fresh Hell is This?" Anyway, in short, no. I am all he has. And I find myself coming up short every day.


It's very hard. Kind words help. Thank you.


The Alzheimer's Association has not been even slightly helpful. I'm sure they exist only to raise funds for themselves, which they do magnificently. (But not from me.) Family Caregivers Alliance gave me the respite care grant right before all this started with hospitalizations and nursing homes, but now it's out of their arena. I appreciate your willingness to help.


I know all that is standard procedure, but it irks me anyway, mostly because they ask their questions in front of Flip, as if he's a piece of furniture. He still understands what's going on, he just can't express himself verbally any longer.

I just called to see how he did last night and was told "he tried to get up several times," which infuriates me. I replied that he is still young and physically active, although he has AD, and used to being able to walk around. So already I'm worried - their attitude seems to be adversarial to their patient who must be controlled.


All hope welcome. Thank you.


"Piss holes in the snow..." I have sunglasses and I'm not afraid to use them.

I think politicians are the same everywhere, which is why I pretty much despise them all. It seems we have paid dearly in human kindness for our technology wherever it exists.

neora chana said...

I just wish you all were here and that I could be Flip's case manager.

e said...

Please call your politicians, including Governor Brown...As Walking Man says, the squeaky wheel gets the grease. Sending hugs from afar.

Anonymous said...

Just when I thought this horrid disease was the cruelest of all, along comes the "treatment" for said disease, which comes in twenty-seven parts, all new ways of extracting pain from the inside out.

I am amazed, appalled and beside myself with disgust. I am sorry. Stay strong, Susan, there is an answer to all of this, a way through this forest. There just has to be. Hugs.

heartinsanfrancisco said...


You're hired.


A bit of encouragement today, perhaps. I spoke with the social worker at the nursing home, and he is trying to find a place in SF as the mother company owns about 50% of the facilities. Fingers crossed.


I'm sure that way will be found soon. I am trying hard, and there are people who want to help - see comment above. Meanwhile, it's a long weekend and I'm going to focus on trying to make Flip's life a bit brighter in every way I can. Hugs back.

Tanya Brown said...

Beyond Kafkaesque. There's a special circle of hell for heartless bureaucrats, isn't there?

heartinsanfrancisco said...


Absolutely Kafkaesque. I can feel my tentacles growing now.

secret agent woman said...

Oh, I do remember that now. So hard to be the sole caretaker.

heartinsanfrancisco said...


Yes. It truly is, even though I have always taken the position that if you want something done right, do it yourself.