Tuesday, October 11, 2011

Update, because Updates are so much Fun.


For over a week, Flip has refused to enter his room unless he is unconscious. When I check on him at night, the nurses tell me he is either wandering aimlessly and falling a lot, or sitting in a wheelchair by their station. It's clear to me that he knows something is not right about Shekiya, and he expresses his displeasure in the only way he can. It was time to do something.

The director wasn't available so I spoke to Hillary, the director of nursing, about the problem. He took a firm party line, stating that if Flip is dissatisfied, he should be the one to move despite the fact that (a) when I complained initially about Shekiya's placement with Flip, the director said she would move "her" and (b) Flip suffers from dementia while Shekiya, who is 36, apparently does not. It would be disorienting to Flip.

He said, "Shekiya has not complained and moving her would be prejudiced." He leveled a stare at me and said, "I don't know if you're prejudiced or not." I responded that as it happens I am not, but that I do not regard this as a political issue. It's a medical care issue and I would object to any apparent female being Flip's roommate if it made him uncomfortable. (It occurred to me later that he may have been referring to the fact that Shekiya is black, as is he, but at the time I assumed he meant prejudiced against transgendered people.) Who knows? There are so many potential reasons to be prejudiced. Pick a card, any card. I am developing a prejudice toward unreasonable people, though.

I reiterated that Flip was unwilling to enter his room and he demanded to see for himself. Flip refused to be moved out of the hallway where I had fed him lunch in a wheelchair. Hillary insisted that he could not tell the reason for Flip's behavior and that I could not, either, pointing out that Flip wanders a lot anyway. I said it was not an issue until Shekiya arrived. He refused to budge from his position. I said that I still stand by my initial objection and had decided to take a wait-and-see position so as not to make problems for the director or for Shekiya, but that my primary concern is for Flip. Since he seems not to be anyone else's, my only option is to transfer him to another facility. I had hoped to keep him there despite the inconvenience to me, but if he has to move to a different room, I might as well move him altogether because both will be disorienting.

I think they are bending over backward not to be perceived as politically incorrect while railroading Flip, whose mental capacities are seriously compromised. Meanwhile, they shoot him full of potentially dangerous drugs the minute he seems agitated, and because he is uncomfortable with his situation there, he is increasingly agitated. They are choosing a specious political correctness over compassionate patient care.

The doctor we saw yesterday leans toward the belief that Flip suffers from both Alzheimer's and Parkinson's. We are doubly blessed. There is no way to tell how much the Parkinsonian symptoms were exacerbated by various medications he was given, but his physical movements resemble those of Michael J. Fox.

The staff member who went with us yesterday to help was very nice, but when she tried to pull Flip from the car and into a wheel chair, he fell on the pavement and she fell on top of him. She is a huge, heavy woman, but neither was hurt although her skirt was muddied in the rain. Next week, we'll be going to the hospital for an EEG and back to the doctor on a different day. Two more outings. I can hardly wait.

26 comments:

JeannetteLS said...

Why are alarm bells ringing inside my brain and I want to jump up and down and scream at these people? You have been trying SO CLEARLY to give this a chance. Using humor. Being reasonable.

They are not. And to think he may have Parkinson's now? It would NOT surprise me if some of this has to do with medications.

It is so easy for me to sit her a billion miles away, a stranger, and say try to get him the hell out of there. All I can do is send compassion... from a stranger who made her share of jokes the other day.

This is your dear Flip and I cannot think what you are going through. Maybe folks who know you, the area in which you live, your circumstances, can be of more help. Just know that I read your story and it brought to mind more bureaucratic bull... garbage than I care to think about.

All my best to you.

secret agent woman said...

Politics aside, should they not be listening to your concerns? He needs a male roommate if rooming with a woman is uncomfortable. Plain and simple. The fact that he won't voluntarily enter his room should be reaspn enough. I'm so, so sorry.

mischief said...

I am struck over and over again by how fortunate Flip is to have you as his advocate while dealing with his unfortunate circumstances. He could not have asked for better than he has in you. xx

Paula said...

Susan, I'm still hoping you get this resolved to your satisfaction in some way soon.

Using Flip to try to prove how politically correct they are is discrimination against Flip. I'm not prejudiced against anybody, and if I don't approve of somebody,I still believe in being polite and minding my own business unless they are bothering me. That said, political correctness is getting totally out of control.

As for the drugs/Parkinson's issue, it IS an issue and you need to be watchful. Fortunately, my husband's neurologist is very conservative on drugs and has him on a low dose of Requip, increasing it as slowly as possible, and will not put him on any leva dopa drugs until necessary. My late step father was probably over medicated. Those drugs help for a while, but after they build up in the system for long enough, they not only quit doing as much good, but they bring on increasing hallucinations and dementia. He was on so many of the "bad" drugs. Another thing: he went downhill fast mentally when my mother became ill and was in hospitals and nursing home for five months. The shock of suddenly being in the care of myself and my brother, seeing her for only a short while each day, made him more disoriented.
I can't believe health professionals would unnecessarily move a dementia patient to keep from hurting someone's feelings.

Molly said...

I am so sorry that, just when you need compassionate, intelligent people around you, you are having to deal with the worst morons on the planet.....

e said...

Our wonderful healthcare system leaves so much to be desired it boggles the mind...

I do hope friends and colleagues are able to offer support to you. You have been more than reasonable in this situation.

nick said...

It seems clear to me the managers are terrified of being seen to discriminate against Shekiya, so they discriminate against Flip instead. But Flip is the one who needs consideration, in that he's uncomfortable with his roommate to the extent of not wanting to go in his room. Obviously he needs another roommate he's comfortable with rather than having to move out altogether. The degree of managerial obtuseness is amazing.

TechnoBabe said...

Because of how much I care about you, the angry little girl in me wants out and wants to punch the director of nursing in a few places. But since I have worked hard to get to know that little girl and teach her new adult behavior, I am able to calm down and remember this is not about me and you need people who can listen with compassion. I can do that. I don't have suggestions. I have never heard of someone in your situation and it is so unbelievable that as expensive as health care is now that patients are treated this way. The mentality of keeping them drugged enough to keep them from being a bother is heartbreaking and also scary. This could be any one of us some day. Is this what we have to look forward to? Next time you hug Flip, please hug him from me and James.

the walking man said...

I sit possible that Shekiya has made inappropriate advances towards Flip and he can not express what is wrong only that something is not right?

heartinsanfrancisco said...

Jeannette,

Thank you for the reality check, and for all the comfort sent my way. It is impossible to deal with closed minds, so I will have to start all over and try to find another facility. I never chose this one in the first place - you're new to the party but he was discharged from a hospital to the only available facility.

Agent,

If only Flip could express himself verbally -- I know that whatever is bothering him is a legitimate complaint and I feel horrible for him.

Lisa,

I do the best I can, but wish I could do better.

Paula,

It's clear to me that they do not care about Flip except as revenue, but they care a great deal about giving Shekiya nothing to complain about. In the process, they are discriminating against Flip. The only way I can fight this is to hit them in the pocketbook by removing him, but I don't want to use him as a pawn and there is no other facility to take him to at present.

I'm so sorry you've had to deal with this awful disease multiple times. I can't imagine!

Molly,

Yes, that's my professional diagnosis too, that they are morons.

e,

You know, I think I have been reasonable and instead of being grateful, they are hurting my loved one in their care. No good deed, as they say...

Nick,

They seem to have a kind of tunnel vision. I was quite surprised by Hillary's attitude, though. I really liked him and thought he would be an ally. Silly me.

Babe,

I am having a hard time controlling my own angry little girl. I had to remind myself repeatedly driving home that anger behind the wheel can only end badly. Even listening to chamber music didn't help.

I so wish my circumstances had allowed me to keep Flip at home with live-in nursing care, but that's impossible in a small apartment with stairs. I will deliver those hugs today, thank you.

Mark,

That has occurred to me, too. It wouldn't surprise me as the first time I saw Shekiya, "she" was lying on Flip's bed trying to look adorable. He was marching around the halls in earnest, looking as if he'd seen a ghost. She had been admitted the night before. I got a nurse to move her to her own bed and then went to speak to the director. I cannot mention my suspicion to the administrators considering the reception I have already received, but they have not heard the last of me.

Taradharma said...

I'm sure, now, that if you mention your suspicions about her possible inappropriate sexual advances to Flip, it will just reinforce their belief that your are a bigot.

Reading your account, my brain wants to explode. What idiots, what morons, what dolts! Careful they don't drive you 'round the bend.

Paula said...

Walking man said what I wanted to say but didn't. This is a real possibility. I would consult a lawyer about the legality of installing a tiny nanny cam type device when the room is empty. If it is positioned such that it won't catch the roommate unless she is in Flip's space, it shouldn't be considered a violation of her privacy, and might well give you the ammunition to get what you want for Flip.

Jo said...

Susan, is there someone who is in charge of the facility, a health authority of some sort? And I know this sounds ... odd ... but have you considered going to the media? You and Flip are a married couple, and yet, the facility insists on placing him in a room with another woman, against your wishes and aganist Flip's wishes. This could open a huge can of worms not only for the facility, but for the organization in charge of the facility.

In Canada, the media would love to get involved with an issue like that. It has nothing to do with the colour of the person's skin.

This is horrendous beyond belief...!

seventh sister said...

I agree with you about the meds. Some of them may be causing the Parkisonian symptoms and they can cause agitation when they wear off.

I don't know if I'd be going to the media or not if it can be avoided. If you do that and they make a big deal out of it, it might make it near impossible to find a place that will take him because no one will want that kind of scrutiny.

heartinsanfrancisco said...

Tara,

My mind hovers near the bend, but I can't afford to go around it.

Paula,

Great idea, but I shouldn't have to resort to police tactics to get the appropriate resolution to this nightmare. I am not giving up. I'm regrouping. (Or as Sarah Palin would say, reloading.:)

Jo,

There are so many issues being handled wrong here that it's almost impossible to choose one to focus on. My instincts tell me that it would be better to handle it myself for now, or to quietly enlist the aid of an organization whose purpose is nursing home reform.

Jackie,

It shocks me that they were aware that some of the meds they were giving Flip were causing and/or contributing to Parkinsonian symptoms. As soon as I learned this (online) and mentioned it, they took him off the offending drugs, which leads to the obvious conclusion that if I had not confronted them, he would have stayed on them indefinitely.

I agree with you about making a big public stink, which would only backfire, even though it's tempting.

Pea said...

wow. just wow. I hope Flip is more comfortable in his new place.....

Pam said...

I am so sorry. To have to fight like this for Flip must be truly exhausting on all levels.The system needs a giant overhaul as it does here in Australia.Sending you my best wishes for a more satisfactory outcome and continuing strength to deal with it. You shouldn't have to negotiate so hard for positive outcomes and have this amount of distress. You need support, not conflict.

the walking man said...

Susan try this number...they may be able to help you at no or minimal cost

LGBT Family Law Matters

Do you need an attorney referral for a LGBT Family Law matter? Please use our Lawyer Referal and Information Service (LRIS) online referral form or call 415-989-1616.

I made a brief call and as ever it is they need to talk with you about Flips situation. But they are sympathetic to it.

Paula said...

Susan, is there a nursing home ombudsman program in your state? These people are volunteers who try to help any nursing home resident who feels anything is remiss in their care or conditions.

lgsquirrel said...

I would encourage you to contact one of those nursing home reform groups that you mentioned as soon as possible. At least you will meet people who care and understand your situation and that you do not have to face the morons alone.

nick said...

Btw, did you ever discover what was wrong with Shekiya and why she needs care in the first place?

heartinsanfrancisco said...

Sweet Pea,

I may be able to move him to a new facility in San Francisco, which I toured yesterday. I was very impressed! Please keep fingers crossed, everybody. Thank you!

Pam,

What is this "comfort" you speak of? I so agree! Our health care industry is a phenomenal disappointment.

Mark,

Thank you for going to so much trouble! Much appreciated. I am focusing on getting him moved to the new facility I saw yesterday which is at least 1,000 times nicer as well as being in SF, and even has a petting zoo!!!

Paula,

I believe there is an Ombudsman program in California, but I haven't availed myself of their services. It's an excellent suggestion. I think I've been so overwhelmed that I forgot I could ask anyone for help. Thank you!

Calvin,

I've put in a call to the organization I know about. I hope they can help.

Nick,

Nobody will tell me, but "confusion" has been mentioned. (Not surprisingly.) And "behavioral issues," like walking around with her pants off. I just learned that. No wonder Flip is freaked out! I'm heading over there shortly to make more waves.

mrwriteon said...

I truly believe you must move Flip, Susan, for the well-being of both of you. If you turned what you've been going through into a TV movie I don't think anybody would believe you. Horrific!

witnessing am i said...

"There are so many potential reasons to be prejudiced. Pick a card, any card. I am developing a prejudice toward unreasonable people, though." A sad paragraph (you? prejudiced?) but a beautifully written one.

The physical challenges to being Flip is heartbreaking. To hear about him falling so much, in a wheelchair, smaller people trying to help move him, etc. Ugh. And to even think about you having to transfer him yet again is inconceivable.

Stay strong, somehow, good Susan. Eat, rest, rest some more.

Maria said...

It kills me when this kind of shit happens. you have gone over and beyond reasonable and they are pulling the "prejudicial" card to get themselves out of a jam.

Tired old tale and damned if it doesn't work each and every time.

heartinsanfrancisco said...

Ian,

Shekiya was discharged, thankfully. But it's always something, and I still don't care for the way that situation was handled.

David,

I will try to follow your good advice. Thank you for caring enough to give it.

Maria,

Well, it does and it doesn't. It gets them what they want, yes, but since I am on to them, it could be argued that it doesn't work entirely. Not that they care. It's sheer manipulation, dirty pool and arrogance. If there is anything I despise, it is being treated like a person of no value and seeing Flip treated like a non-person. I am not letting this go - I am letting it appear to go for now, until he is out of there. I can smolder for a very long time, if necessary.