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Prohobo

Member
Joined
Mar 9, 2015
Messages
18
Reason
Loved one DX
Diagnosis
03/2015
Country
US
State
FL
City
Sarasota
I can't help but feeling guilty - massively so.

We were so late in finding the diagnosis - even after 3 neurologist. It progressed so fast and I was blinded to anything serious.

As it progressed quickly I was foiled at every turn: Took time to get certain meds, time to get a peg tube, time to get certain items for therapy, I felt like everything moved slowly - far to slow.

I have learned to hate HIPAA, government, and general bureaucracy. Those that rose to the occasion and quickly were private donors, foundations, volunteers, and the private sector not hampered by idiocracy.

Most of my time was trying to slash and cut through red tape, god forbid I EMAIL any records to a doctor (everything has to be in paper and fax - thanks HIPPA and government).

If I ever had an inkling for supporting socialized medicine - it has ended completely. I feel guilty that I couldn't cut through quick enough, get my mother what she needed now, or even some clinical trial stuff (which required more red tape and paperwork). Everyone is afraid of law suits and the regulations are so lengthy that any more I would be buried.

Thankfully there were those who rose to the occasion and some that even said "f###" the government rules - let's get your mother what she needs NOW!

I tried to move my grandmother from assisted living to a closer facility to spend the last few days with her daughter (my mother) - on no - that can't happen, we need the 1823 form and a TB test. A state/government form that usually takes 20 minutes to fill out and a Dr. signature, took over 10 days - my mother passed. However, ironically I got it today - the same day they get to bill my grandmother another $5k for her assisted living.

What a way to use government red tape to further line their pockets - slow the process down and charge MORE.

I am venting because I am tired of dealing with paper work, lawyers, social workers, HIPAA, and host of issues that have done nothing but slow everything down and increase price.

Unbelievable...seriously....

We have the best doctors, hospitals, medical facilities, and treatments in the world - our system is not broken, what IS broken is the suffocating laws, rules, regulations, paper work, and government interventionism.

Yeah - it is worse elsewhere, but the idoicracy si that our nation has some of the best - it is just the paperwork, laws, and regulations that don't work. I have a horrible feeling Obamacare is only going to add to the headache of government interventionism.

All I know as that I am stuck with huge bills and my personal insurance prices have tripled since 2010. I also can't use my own doctor :-( - he is no longer in my network.

Sorry for the rant...my mother has passed and now I look at the paper trail mess left behind and the wasted time dealing with it.

I seriously should have easily gamed the system and got my mother on Medicaid - would have been far cheaper and easier. Sucks being honest and paying everyone else's way.
 
I hope you can deal with the guilt quickly, you don't need it.

ALS is a progressive terminal illness.

When the PALS is rapid progression, all your efforts may have given a few more days, weeks or at most months of extra suffering. I would look at Chris and know that every day longer he lived was only another day of more suffering and a new loss for him to endure.

Slower progression is so different as you can adjust and find ways to enjoy life and try to keep progression slower.

You did all you could with the information you had at the time, and if you genuinely loved your mum that is the critical key and all that matters.

ALS takes and takes and takes. Don't let yourself feel guilty for what it did as though you could have done anything. Even trials, with her rapid progression she was unlikely to be a candidate.

So sorry, I know the pain of rapid progression, and I know that in the last months in particular I got caught up in some awful red tape here and it was only sorted and ready to go in place days before he passed, so I felt I had wasted so much time I could have given him. But I felt, like you, angry at the system for that loss. I did not let myself feel guilty on that count.

Rant here, you have heavy grief now to deal with as though you haven't been through enough!
 
Vent all you want on here. But, don't feel the least bit guilty about a thing. We know from your posts how much you love your mother. I'm sorry you have to deal with all the legal crap and all that stuff. Hugs, Kim
 
Prohobo,
There isn't any CALS survivor here who doesn't feel regret. Let it inform your future dealings with the health care system but don't let it intrude on your good memories of being with your mom. She would not want that.
 
Prohobo, I'm sorry to hear about your mom. The disease killed her and there isn't anything anyone could do about that. You worked hard and did the best you could, so there is no need to feel guilty. In fact, you should be proud that when life gave you the worst challenge ever, you kept it together, stayed loyal, and succeeded where you could.

Your post reminded me of the movie Schindler's List. At the end, Schindler saw that he had saved thousands of lives, but then broke into guilty tears because he felt that he could have saved one more. He was a hero, as a think many CALS are.

I disagree with Laurie. I have no regrets. I've been proud of all we did for my PALS. We worked very hard--it was tiring. But we did the best we could and had some success along the way.

Perhaps now you can think of your mother looking down at you and thanking you for your extraordinary efforts. She's free now. You're her hero.
 
Whoa, Mike, I didn't mean that you were living in a sea of regret (what I'm advising Prohobo not to do) but that "life is what happens while you are busy making other plans," as Lennon wrote. Our best intentions and hopes don't always materialize -- part of being human.

We're all justifiably proud of what we do/have done for our PALS, and know, CALS, that stated or not, your PALS is proud of you, too.

--Laurie
 
Prohobo, This disease is the most insidious disease. There are so many presentations, so many symptoms the doctors try to explain away or give you a med for and move you along. Unfortunately, whether you found out sooner or later, the end result would be the same. Your mom likely knew for some time something was quite wrong. Guilt will get you no where. You did your best with what you knew. That is all we can do.
 
. . . Your mom likely knew for some time something was quite wrong. .

Yes, I think our PALS knew something was quite wrong long before any diagnoses. The summer before his diagnosis, after he had started seeing a neurologist for a few months, my hubby decided it was time to get our financial house in order, like setting up a living revokable trust, healthcare POA, etc. Something that we had intended to do but always kept postponing.
 
Prohobo, I'd like to add that your mom probably wouldn't have wanted you to know any sooner than you did because she wanted you to go on enjoying your life. If I remember correctly, there was a lot of angst over a family vacation, and it was causing conflict with other family members. Knowing sooner would not have added a day to her life--it would have just started your grieving that much sooner. Go easy on yourself. As for the system that tangled you up, well, no argument there. Direct your anger outward--guilt is out of place. Wishing you peace--it's what you mom would have wanted for you.
 
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