[LeviM]

Hi everyone.

This is my first real post other then dropping in on an introduction thread the day I registered an account and I appologize for it's length if it ends up long. I usually just read to find the answers I need or just to have the comfort of knowing I'm not completely alone with certain feelings or difficulties. I guess I needed more personalized advice or insight this time so that is why I chose to post. I am a 31 yr old male C7-C8 incomplete. I moved to the Houston/Galveston area almost 3 years ago and rented a garage apartment until July of this year. Due to unreliable home health and attendant service the home owner had concerns about my safety and feared possible liability issues in the event something bad happened so I was forced to move into an assisted living facility. I am pretty unhappy here but I do realize things could be far worse and I am grateful that they are not.


Anyways onto the issue at hand. I have this long history of just going with the flow. By this I mean I remain passive and don't push to make sure my needs are being met. It doesn't take people long to figure out that I'm not the confrontational type and that they can get away with not providing the services they get paid to provide. In the long run I'm the only one who suffers from it and eventually I get angry about it. That anger always starts out directed at the ones who have taken advantage of my situation but it doesn't take long before that fades and I become angry with myself for being such a push over. The self directed anger takes a much longer time to dissipate. I have made the effort to try and be assertive/proactive but I fail at being consistent with it which in the end only makes things worse. I have no family or friends anywhere near where I live to help make sure things get taken care of and to be honest I have grown tired of the whole struggle. I know my life could be a whole lot better than it has been if the quality of care I received was improved, but ultimately I just don't have the balls to stand up to people to make that happen.


I am the one to blame. It's a pattern that has repeated itself over and over even pre injury/illness and I am the only one that can change it. I want to but every time I make a complaint to a supervisor or remind someone they were supposed to assist me with something and they forgot, I feel really bad. I feel like I'm being ungrateful or that I'm being viewed as a "problem patient". In the end its just provokes a lot of anxiety. Most days I feel hopeless and lack the desire to even try to continue to resolve this issue. It isn't until something pushes me a bit too far and I become angry that I once again become motivated to fix it. It is also very easy for people to turn things around, ultimately leaving me convinced I had made a mistake as to the schedule or miscomunication leading to something not being taken care of.



This go round it was provoked because I fell in the early morning hours while trying to slide from my chair to my bed via sliding board. I laid in the floor awake for a couple hours before finally falling asleep. Apparently they came in to deliver breakfast and morning meds but didn't even try to wake me. It wasn't till the pca came in to deliver lunch at noon that I heard the door open and woke up. Two different people had came in and walked out without waking me to find out why I was in the floor. I reported it to the administrator and she asked the med tech why she didn't wake me to find out why I was in the floor and the only response she had was "She assumed I had been partying the night before and laid down in the floor because I couldn't make it into the bed". As far as I know she will recieve no consequences for this.



This really upsets me because I don't drink, I don't do drugs. My sliding board was still positioned between my chair and my bed and her assumption made no sense at all, as it would take far more energy and mobility then I have to make it from my chair to the floor without just letting myself crash. What it really boils down to is they didn't want to be bothered with dealing with getting me up and re-situated in bed..Laziness. Anyways I'm really upset over the whole situation here and I could really use some advice on how to be able to put my foot down and hold people accountable consistently without feeling like I'm the one that's the bad guy. This is going to be a life long pattern no matter where I am or who is providing my care if I can't learn to deal with it

[greybeard]

Hi LeviM,
Sorry to hear you are having such an unhappy time at the moment.

You seem to have worked out for yourself what action is needed and who needs to take it. You.
If you have no supporting friends or family close by, you have to deal with this yourself.

How you can raise your self esteem and self confidence is something I'm not qualified to comment on, but why don't you book a few sessions to discuss this with a properly qualified therapist?

This post has been edited by greybeard: 20 September 2009 - 01:10 PM

[bobm]

Some of us are better advocates for third parties than we are for ourselves;

In my case the problem may have originated in a home background in which self-promotion was, shall we say, "discouraged".

Like it or not, Levi, if you don't speak for yourself your case won't be heard.

Go for it, and good luck.

[edlee]

You know the problem,, you know the solution.. Changing habits takes a lot of work,, but if you give up easily,,, as you have said that you do,, then you will probably give up on that, too.

GB gave you the only answer,,, therapy,, well, that and coming to the conclusion that YOU are the problem. But, then,,, you have said as much in your post,,, so you are aware of it.

It does seem to be the attitude that a lot of us adopt,, that is that if we have no expectations, we will have no disappointments. Unfortunately, as you have pointed out,, this isn't accurate.

Decide for yourself what it is you want and what it is you need,,, then ask for what you want, but demand what you need.

Good luck
ed

[Karl187]

Holy crap, Levi! If that happend to me...

I used to be the same way when I was younger, I hated confrontation and I let people walk all over me and would then get upset at myself for not doing anything about it. I'm not asahmed to say I went into therapy for it and it did me a lot of good. It made me more confident and assertive in the types of situations you find yourself not to be. Therapy can give you tools to help overcome situations like you have described and I would recommend it.

You're not the one to blame though. Nobody should have to ask to be treated like a human being. Unfortunately we live in a seriously flawed world- but you shouldn't take things like you do. If you feel like getting mad at someone, then get mad...foam at the mouth and shout the walls down. Show them you are not a walkover, you deserve respect and you'll damn well get it, or else! And if you feel like you shouldn't do this because you might feel bad afterward, just remember your fighting for yourself, and you deserve good treatment. And you should receive nothing less.

Good luck, Levi.

[allister]

Hi Levi

I can vouch that therapy does help. LIke you, always the easy going guy, not wanting to upset anyone.
There does come a point though when you have to take responsibility for your own actions, and its your own actions that have amplified your current situation, housing - and low self esteem.

The last couple of months have been very difficult for me too, going from, L4 L5 incomplete limited walking ability to para. I have shouted - pleaded - chased - harassed - hounded everyone, from GP's - Consultants -OT's - Physio's - Social workers - District nurses - Urologists - - - - - the list is endless.

If I hadn't have done this, I would be still laying in a bed, in a locked neurology ward, probably going insane through frustration. Through the help , support and advise of the guys here who post, I have managed to resolve many issues, and escalate those still awaiting answers.

I asure you, you will feel guilty for doing this, I did/do, but then you think....if others were doing their jobs correctly, then I/we wouldn't be in this situation of batttling for our rights.

Its not going to be easy, probably will be tears befor bed time too, but it's only you that can make the difference to your life

I wish you all the best, You are your priority and only concern.

Just believe and trust in yourself. Al.

This post has been edited by allister: 20 September 2009 - 11:34 PM

[qbounce]

I'm truly sorry you fell out of bed . . . . but then why weren't you calling, then yelling, and lastly . . . SCREAMING for assistance to get off the floor and back onto your chair. How about sliding to the door, openning it, and going out to the hallway to get help.

Like others have said here, if you don't advocate your own help, who's going to do it for you?
Sorry, but you should at least take half the blame for just sitting there for a couple hours instead of being proactive and moving to a place where you could at least be noticed.

When I got my flap surgery 2 years ago, I finally found my voice when it came to asking for help or anything. I looked around me and realized all these loud mouths were getting anything and everything they wanted while I, Mr. Niceguy, felt more or less ignored. So, I just started inquiring, "How do I get this?" or "Can you do that for me too?" Well, wouldn't you know, I was still the nice guy, but now I was also getting what I wanted.

The squeeky wheel gets the grease, so get to squeeking!!!

[LeviM]

The assisted living facility I live in is an apartment style living environment with 2 sides.One is assisted living and the other side is a retirement community. During the night there is only one staff on the property and the only way to reach him is by calling the after hours number. I do not have a phone. I don't have the ability to drag myself much of anywhere much less make it from the bedroom, through the living-room to the front door. Evening sliding across a glossed sliding board is difficult but on carpet forget about it. Even if I were able to make it to the door the likelihood of being heard and helped are not very high at that time of the morning. This facility at one point was an apartment complex that was redone and it is a decent sized property.

Qbounce,
As far as me not taking the blame I think you completely overlooked many things that I said in my original post so I will say it one more time for clarification. I know without a doubt people treat me the way they do because I allow them to... I take full responsibility for my lack of assertiveness. BUT with this said it still does not excuse people from their part in it.


The whole point of this thread was to get opinions, advice, or personal experience to learn how others have overcome this issue without feeling like a complete dick. Since asking nicely hasn't worked well majority of the time I will heed the advice given in this thread and try to get in with a therapist to learn how to be a dick effectively and consistently.

It's a real shame being courteous and respectful get you nothing but grief these days.


Thanks to each of you for the imput.

[Denny]

Sorry to hear that you are having hard time. I am no good in advising nor qualified, here is what I think I would have done in your situation.
While there are many very good carers, a good majority are doing it for the sake of income, and they dont really enjoy the job. Most times they are pressured to do more work in short times, so they tend to ignore work where they can. If I were you, I would try to identify person who care for the job and make friendship with them, no one generally rejects a friendly request. Make conversation to the carers (not always easy) and build up a friendship. Think about what you want from carer and communicate it to them after a friendly welcome. If work is not done completely give them indication that you will take it up with their manager. Just ask them their managers name and contact details, not necessary that work always. Don't forget to praise/thank the person who does good job, and even mentioning their name to their manager. Keep a note of things I have requested and not got done, and at end of the week request meeting with their superior. Keep the complaints in writing/mail so that there is proof that I have made enough complaints. If situation does not improve, try take it up with higher authorities.

Some times you have to raise your voice to be heard, and there is no alternative to it.

[qbounce]

Levi,
thanks for clarifying the situation. Sounds like you could use an emergency phone there or a caller button. It's bound to happen again, so at least being prepared is half the battle.

And your right to some degree about being polite. You can start out being polite. It can't hurt. But when no one's listening, that's when you turn up the volume . . . . just smile doing it.