Tuesday, January 13, 2009

That's something I never hope to do again...

I just finished filling out the third-party report for Chris's mom's disability claim.

That sucked.

I'd never thought of the many ways she's incapacitated at once before and it just reminded me how much her situation sucks, and how she should be dead by now.

But she's not, and if there was a worse way of handling her condition, I don't know what it is.

Goddamn pride. She's full of it.

Despite the gaps in her memory, despite the brain damage, despite her physical difficulties, she's utterly convinced she should be able to handle this all by herself and that if she hands over control, she might as well be dead.

Her pride is her biggest problem at the moment, and unfortunately its not just affecting her. It affects the rest of us too, as we struggle to keep a roof over her head and her pain meds filled despite her either being passive or actively working against us. She doesn't want the help, and it galls her to need it.

It makes taking care of her difficult at the best of times. There's a reason I drive her around; I'm the best at biting my tongue and I bite it a LOT. But at times that doesn't even work; sometimes what I think is completely innocuous small talk will set her off for one reason of another. She has huge gaps in her memory so referencing an old event sometimes upsets her, because she swears it never happened or if it did, that no one told her or invited her. I swear, the paranoia is intense. The only reason I survive as her "aide" is because, for some reason, she likes and trusts me (this would make me a rare creature indeed).


It's a difficult situation to be in, and if she was anyone else I would have thrown my hands up and said, "fuck it" a long time ago.

But she's Chris's mom. She needs taken care of. If we don't make sure she's taken care of, no one will. And since he can't take care of her, some of this load falls on me. I do it not for her, but because by making sure she's taken care of I'm easing his mind. And because I'm doing it for him, I can put up with just about anything.


But I do wish this was over, and I do wish she'd give up her goddamned pride and live in the real world with the rest of us.


Glenn Bartley said...

Obviously I do not know Chris' mom but my bet is you are both missing a lot when you attibute all or many of her efforts at resistance to pride. Yes some may be due to pride, but chances are there is another cause. I have seen quite a few people get to the same state with age and health; for example my Greatgrandmother, my grandfather, my mother, an aunt, relatives of close friends, and a close firend of mine. All of them to one extent or another resisted all, or at least most, efforts to make things easier for them. The most recent example being my own mom.

She just went into an assisted living facility - a place much like an apartment complex with helpers for the residents - just a lot more expensive than any apartment in which I could ever afford to live. She was dead set against it. Just as she had been dead set against selling her house and moving to my sister's house, dead set against accepting help, dead set against the knowledge of doctors, dead set against suggestions from her children, dead set against everything and anything because she always knew best and she was unbearable about it all. None of that, or very little of that, was fueled by pride in the case of my mom or others I have known who acted likewise once in the situation they shared in common - as in being old and in an absolutely terrible state of health.

What did fuel most of the resistance was fear. It is not so much they are to proud to give up control, to do it the doctor's way, your way, your husband's way, the way many others do it or suggest they do it - rather they are too afraid to go there. The 'there' being the place where they are no longer in control, no longer healthy enough to care for themselves, no longer able to be themselves without others helping them. They are afraid because they are or will not be in control of their own lives. For the great part we control our own lives (on a personal level) throughout our adult lifetimes. To now go back to a point that existed well before we reached adulthood is scary to say the least. Now mind you, that while someone may have also been this way most of their adult life, as in moody or independent to the point it hurts others, or whatever, a lot of that may also have been due to fear that was not apparent to others, and if that was the case it makes it worse when the person ages or winds up in a state of bad health.

Helping someone overcome those fears is 90% of getting them to the point where they will, if not gladly - then at least readily, accept help. That requires establishing a lot of trust, and that is not often easy with older folks or very ill because the state of their mind often changes with age and or illness to a point where they trust no one because of their fears - not even their own children to some extent.

They fear not being able to care for themselves, they fear getting old, they fear being considered useless, they fear they will lose your love, they fear losing control, they fear going into a home or assisted living residence, they fear being ill from the ravages of age, they fear that sooner than later death will be knocking on their doors and they lash out even at loved ones (sometimes more so at loved ones than at strangers). It is not easy having them come to grips with those fears, but if you can figure out a way to do it, my guess would be that Chris' mom might be easier to care for. Before helping her overcome any such fears if she indeed has them, and it is almost a given that she does to some extent, then you have to realize that fear more than pride could well be the cause of much of her behavior.

Hopefully everything will work out for the best.

All the best,
Glenn B

Melody Byrne said...


I did not think of that way. It's entirely possible she hides her fear under stubbornness and pride. I personally do not hold the same fears (after watching the way my mother died, I think death would be preferable sometimes) and so I did not think that after 25+ years of serious illness that Chris's mom would still harbor those fears.

I took what you wrote into account, thought about it for a bit, and realized you may be completely right. Despite the fact that she has "rescuer complex" (i.e. someone will come save me) she may have a very deep fear of loss of control.

Maybe I can help her with that.

Glenn Bartley said...

I may not be right by a long shot but it all is something to consider. I see it in my mom and other old folks with who I have been associated. Seems to get to a lot of them.

Best of luck for and with Chris' mom.

All the best,

Mulligan said...

fear rarely manifests as fear.

I applaud you for helping someone, but keep in mind, the gov's disability process will never be over. It is the nature of the system to make you do more paperwork and provide justification over and over and over. Getting the benefits is in many ways not a benefit.

I live in a constant state of "i'm afraid my paperwork isn't filled out correctly"