Flip is in the hospital. I took him to the ER a week and a half ago because he was massively confused and combative, and I thought he might have had a stroke. After many hours, it was evident that I could no longer safely care for him alone, and he was admitted. He has been there ever since.
I spend many hours with him every day, and he seems to be worsening at a shocking rate. The hospital staff is wonderful, and has arranged for personal care assistants to be with him at all times as he needs help eating, walking and performing the most private acts. He is deprived of his dignity on an ongoing basis, mightily confused and often agitated, but still aware enough that he is miserable. It will be easier when he loses that awareness, even though it will also be sadder as there will be almost nothing left at that point which is incontestably Flip. This disease is eating his brain, his body, and his very essence. For me, every day inflicts a fresh wound as I steadily lose him in increments. He is dying inch by inch. What manner of deity concocted such a cruel punishment, and why has it afflicted someone who has always been incredibly compassionate, generous and kind?
The hospital case manager is pressuring me to take him out of there as he has overstayed his welcome, but the nurses who are actually involved in patient care agree that I can't safely care for him any longer. They claim to be amazed that I managed to do it for so long.
Yesterday, I visited my first-ever nursing home. It truly did resemble death's waiting room superimposed on an elementary school with a very low budget. All the residents I saw were decades older than Flip. I also disliked the fact that it was located in Daly City, which is a particularly odious part of the Bay area. I think Daly City is God's punishment for anyone stupid enough to leave San Francisco without crossing either the Golden Gate Bridge or the Bay Bridge. Plus, I have always gotten lost there on my occasional forays to Krispy Kreme Donuts, the only one in the entire Bay area, on the way back from Home Depot. Yesterday was no exception. Mapquest helped me to navigate many surface streets and two freeways until I got to Daly City, at which point I got so lost I thought it must be a sign and nearly turned around. I was a half-hour late for my interview.
Today, the nursing home's administrator came to the hospital to assess Flip and decided that since he can still walk, he didn't belong there. Good! I wasn't planning to take him there anyway. In fact, I'm not sure what I'll be able to arrange because he doesn't qualify for Medi-Cal, called Medicaid in other states, but we can't afford private care at thousands of dollars per month. So we're at an impasse. I know there has to be a solution which hasn't yet revealed itself to me. One of the worst aspects of this dilemma is that I would normally discuss it with Flip and we would arrive at a solution together, but that is no longer possible. It feels a lot like betrayal and it tastes bitter, like blood, in my mouth.
A young couple moved into our apartment building today. I haven't seen them yet, but I have been hearing them since I returned from the hospital. They just noisily saw friends off who noisily arrived an hour ago, and yelled "Thanks for the champagne!" From this I infer that they are at the beginning of their life together, and I wonder what it will hold. Will one of them develop Alzheimer's after twenty happy years, and the other be where I am now? I'd like to think that in twenty years this disease will be cured or rarely contracted like small pox and bubonic plague. It deserves to be obsolete. But statistically, it is gaining in the polls and becoming epidemic, just when our national healthcare system is at its sickest. What manner of deity indeed?
26 comments:
This is the most despicable disease, unimaginable for any not directly experiencing the fallout. What would become of Flip if you were not there? What would the hospital/authorities do? They couldn't turn him out. Make them tell you what their solutions would be. The agitation and misery that you see in Flip is in great part inherent to his illness. There is no "happy place" for him. Your comfort should be that his perception is very limited. One saving grace.
There is an email link from my blog profile. I am not far away, on the Peninsula (although not in Daly City:) If you want some company or a safe place to vent, connect up.
That is so terribly sad, watching Flip gradually decline day after day and seeing him lose every little bit of what he once was. I hope you can find some way forward that doesn't erode his dignity even further.
what a journey! And Yup what deity! And well you know I can go on and on but what really matters, what I really want you to know is that if you need to hear a puerto rican voice lending support, I am here. Be strong, know you are loved, have faith it will all be what it is meant to be. besos muchos besos
The downside to Flip being in the hospital is the more he is there the more he acclimates, the upside is that he is getting better than adequate medical attention.
English Rider had a good suggestion about asking the hospital authorities what thy would do if the situation were reversed. But I am probably a bigger pain in the ass than she is and I would be getting a hold of every god damn legislator and functionary of medi cal and asking them what the fuck and why the fuck. get entangled in the bureaucracy and twist it by the nuts hourly. Get your friends who are constituents to call and join the fight. Fuck it call Jerry, he is supposed to be governor of all California even them that are sick. In short now is the time to fight.
Anger may be the last resort of fools but it may be time for the fool in you to come out.
Love
mark
Susan, my heart goes out to you! It is so hard to have faith in the face of such seeming injustice. I cannot believe a civilized country like this would leave you to cope alone ---care dependent on your ability to pay. I've been storming heaven of late anyway. I will make Flip's and your welfare a permanent part of my demands!! Hugs and prayers from Molly
hospitals generally have social workers to help come up with care plans for patients. Is there such a group at your hospital?
It is monstrous that you both have to endure this disease. Completely unfair.
Sending best wishes for a better outcome.
I would speak very candidly with Flip's doctor and a social worker who may be able to provide some alternatives. Mark is right when he suggests getting the attention of legislators and the gov...they need to understand what and who their policies effect.
Somehow you need to get to the right people in the right place who have answers for this situation. It does look like that means talking to every person you can get to. If you need help with emails or letters let us help. Just because I don't live in CA any longer doesn't mean I don't have a voice. James and I speak about this issue and have talked to a lawyer here but this could be us one day. It could be any one of us. This is no joking matter and I feel so frustrated that you are in the situation you are in with no answer in sight.
I am so sorry. I wish I could do more. As the others have said, it is not right that in a country like the USA, you get no help from the system. Change is needed. I believe that God grieves along side us in times like this, where the world system has the means to help but fails to do so.
I pray that God will surround you both in love.
Susan, I'm so sad to think of all this bureaucracy you have to navigate as if losing your partner is not difficult enough. I hope an answer reveals itself to you quickly, and I am glad, on your behalf, that Flip will be cared for so you have the opportunity to get some rest and time to take care of yourself. I can only imagine there has not been nearly enough of that in the last few years. With love. xx
I am so, so sorry for you both. The anger I feel at what we are forced to endure at what passes as medical care in this country must pale in comparison to what you are feeling, I cannot imagine. WE are the civilized ones?
I'm truly sorry.
A cure, yes. In the meantime, meaningful care even if you're not a multi-millionaire.
My thoughts are with you both.
Such a hard situation, Susan. I know someting will come through for you and Flip. Sending you love.
i cant imagine how stressed and sad you must be right now. I really truly hope things with the hospital and MediCal resolve themselves quickly.
Hugs to you both.
ER,
I'm distressed to hear that the agitation and misery are inherent because I've been hoping that when he has less awareness, he'll be in less emotional pain. Thank you for your kind offer.
Nick,
I hope so, too, but believe it's unlikely as the disease progresses.
Eslocura,
I always want to hear a Puerto Rican voice, period. Especially if I could hear it in Puerto Rico. Besos y abrazos
Mark,
Flip is not acclimating. He is miserable, and so I am, too. Your ideas have much merit, but between spending hours with him every day and trying to find possible facilities while also fighting financial battles, I simply don't have time or energy to buttonhole Jerry Brown. But somebody should, and Obama too because our health care system is barbaric,despite the high level of medical practice. It shouldn't cost a president's ransom to get decent care.
Molly,
I appreciate your hugs and prayers. As for "civilized country," I believe that would be Canada.
Tara,
I met with the hospital social worker last week. She promised (twice) to come back but so far, she hasn't. Maybe she's sold me to another agency like collection agencies do with their non-paying debtors.
e,
Do you really think elected officials care? Most seem to stand for nothing but election. Yes, I'm growing cynical.
Babe,
I'm frustrated too, and scared. And I'm floundering. Thanks for your offer of help - if I can think of anything for you to do, I'll ask.
Calvin,
Thank you. You could not wish us more than that.
Lisa,
You have gone to the heart of the matter. I told the case manager, who is harassing me about Flip's continued presence there because I "should be working on this 24 hours a day," that I am doing the best I can and would like a bit more sensitivity from him. I am witnessing the man I love dearly unravel stitch by stitch, and as if that were not bad enough, I have to go to war against a system that would rather kill people in other countries than help us here, now. He even demanded that I buy a laptop so I could look up places from Flip's hospital room. Jackass.
xxx
Bob,
A country is only civilized to the extent that it takes care of its citizens in need, not just its richer citizens, like our fine neighbors to the north.
OD,
Thank you for your thoughts. They help.
Jackie,
I believe it will,too, but I'll have to work hard for it. Thanks so much!
I bought Flip a portable CD player and brought some of his own recorded music so he could remember who he is.
Rachel,
From your lips to the ear of the deity of your choice... I am sure there's a solution which hasn't revealed itself to me yet.
Since I can't come up with anything better, someone in Philly is sending happy thoughts in your direction.
One of the reasons I believe in no deity at all. The ran falls on the just and the unjust alike, and Alzheimer's is just a vicious and unrelenting disease, striking where it will. I'm so sorry you are stuck in a situation where there are no good answers.
Paige,
Thank you for the good thoughts from your very lovely city.
Agent,
Yeah, it's very hard to reconcile such beliefs with reality, but more power to those who find comfort in any way they can.
i am sorry for you :(
I'm not sure if this will help because I don't know the costs, but a friend found a good small place in SF located on Spring Street near 101 about 13 years ago. I am sorry I don't know the name of the place. It looks like a regular house. Another friend just now found a place in Belmont at the corner of Ralston and Alameda de las Pulgas. Sunrise Senior Living.
What a tragic story. Is he not eligible for Medi-Cal because he has too many assets? In my state, if that were the case, they could be allocated to someone else, or he would be eligible after he was spent down.
Do you have options between home and nursing home? In my state, we have several facilities for different levels of care, including community based residential facilities for people who do not have skilled nursing needs.
Is he eligible for hospice? While this is difficult to accept, it may provide him with the extra support he needs to come home with the help you need.
In my state we have ombudsmen to assist when one is having problems like you are.
I will try to google topics related to long term care in California to see if soemithing hits me between the eye, since I work in the field.
I hate to say it, but sometimes it's the words you use.
Neora
Muhammad,
Your sympathy is appreciated.
Leight,
Thank you for the suggestions. I'll check them out to see if they are still in operation as many such places have closed in recent years.
Neora,
He is not eligible because his Social Security Disability benefit is too high, not because of property which could be divested. There are several Catch 22s in place here - Medi-Cal only pays for Skilled Nursing care, and to qualify for that, one must need intubation, regular injections,have a colostomy bag, etc, none of which applies. Every other kind of facility is private pay only, some of which cost $12,000/month. There are residential facilities here,too, but they are also quite expensive. It's a quagmire, but I'm sure I'll be able to figure out something. Your suggestions are all good ones,and it is often the words we use which make the difference.
"They claim to be amazed that I managed to do it for so long." Susan, as I have told you, you have definitely earned your angel wings. Flip is so lucky to have someone who loves him as much as you do.
I wish the system were better where you live, but we have to take the hand we're dealt, don't we? Just from hearing your story, I am gobsmacked at America's health care system. It badly needs an overhaul. In the meantime, please let me know if there is anything I can do ~~ even from this distance. I am pretty good at cutting red tape.
And you need to get some much-needed rest...!
I can only imagine what you are describing. What deity indeed. I have no ideas for you to make it better, all i can do is listen. Hugs.
Just thinking about you today. Wondering how you're doing.
Jo,
I'm no angel. I love Flip. But you are so right on the sleep issue. Thanks for your offer - if I can think of anything, I'll be happy for your help.
Meno,
Hugs help. Hugs are good. Back atcha.
Lisa,
My new post will answer your question. Thanks for checking on me.
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