Topic : Physically Challenged Adults Support

  Hi,  I would like to know about help for the care giver!!!  My hsband lost his leg about 2.5 yrs ago.  He's 50, has heart disease, diabeties, vascular disease, depression, ulcers, and a few other problems.  I'm exhausted.  I watch our 4 mn.old grandson everyday, our 8 and 5 yr old grandchildren everyday for an hour til their Mom comes home from work and I watch our 5 yr old and 2yr.old granddaughter 2 days a week (5-7hrs.) so their Mom can work.  Then I have my husband, he stays in his room and directs everything that he thinks should be happening from there.  The kids go up stairs to play or watch TV with him some of the time.  He has his leg but really doesn't use it he just stays in bed 99% of the day.  Rehab was a joke,  my husband would go to his appointments and then go back to his room.  Very rare he goes sits out in the back on the deck.  only if he has cigars will he sit outside.  I sleep on the couch, ( I don't want to wake-up to a dead body),  also he doesn't sleep much at night and he moves all over the bed.  I tell him if he wnats to eat he can come downstairs,  that worked well NOT!!!!  I do everything, he cann't drive he has some problem with his eyes and he let his license  expire 3yrs. ago and the Dr. won't release him to drive with out a review manag. course that cost about 480.00.  He gets disability WOW.  Our yougest daughter and her husband live with us, along with thier 4mn old son.  We couldn't make it on our own.  I had to quit my part-time job due to the medicaid spendown.  I lost my insurance (not much to loose),  but  when you are on blood thinners and need your blood tested every month the insurance helps.  I cann't get medicaid, believe me I tried.  Any support groups are directed to Seniors,  we're only 50.  Well thanks to whom ever reads this and ...........

Peripheral neuropathy, excruciating pains.  Doctors treat me like dirt, been to three appts, turned away each time because of their incompetencies

 

Denied SS disability.  No one will hire me, been out of work for two years.  About to lose everything.  Every road is a dead end, every promise a lie.  Every hope destroyed.  Every friend has let me down, except for my Muslim Friends in Sweden.

 

My own church, adjacent to my property, the people never ask how I am, never come to see or call. Never offer any help. 

 

But my 2 Muslim friends in Sweden who are in my child abuse campaign check on me at least 2 or 3 times per week.  They never pressured me, or sololicited my conversion.  I asked them.

 

I converted to Islam yesterday.  I feel loved, cared for, and like I have TRUE friends now in this world, although thousands of miles away.  I am in the USA.  They have been my friends over a year now, and yesterday was the first time we actually spoke on the telephone,  It was uplifting, very spiritual and fulfilling.

 

I feel a renewed sense of hope and life.  I received a copy of the Holy Qur'an the other day, and sat down and wrote an email of my visions about the prophet Muhammed to my Muslim friends.  I knew nothing about the specifics fo his life.  Only that he was a great prophet, and that he wrote the Hold Qur'an. 

 

Although I am in excruciating pain, it hurts to type, I have a sense of belonging, a sense of being cared for, a sense of being a person, and not victim of the imcompetencies of our medical commnuity and government any longer.

 

The pains persist, but the spirit has risin.  Now, I feel there is hope.  Not from the buerocratic brick wall of our society that seems to be designed to cause one to suffer as much as possible before finding relief.  But from two kind and caring individuals who happen to be Muslims, and became my best friends.  Is that not amazing?

 

My name is Darrell Matthews, from the US, but my new name, my Muslim name is Sahfire.  I feel a part of something.  They have spent endless hours corresponding with me via emails, and when things got too hard for me to carry on,  I asked them how to covert to Islam.  So they called me on the phone, and talked for about an hour. 

 

Isn't it amazing that our doctors, corporations and governemental agencies are so arrogant and detached from the suffering of human beings?  Is it not pethetic that animals are treated better than I have been treated over the past few years in this so-called "great" country of ours? 

 

Sure, if you have money, good insurance, or something to fall back on you get respect.  But if you are taken advantage of because you are too ill to work, after having worked hard for 35 years, no one pays attention, no one gives a damn. 

 

I have told several doctors that I have lost the will to live because of my pains, paralysis, and incapacitation, and they say,  yada yada yada, shut up and go away, i don't have time for you.  And because of these incompetent doctors. I have suffered so much pain.

 

Every morning, it's like knives jabbed in my back, up and down my spine.  It feels like I have be beaten all over my body with a baseball bat by a super-man.  It hurts, and no one gives a damn.

 

But I have Muslim friends who care, and now, I am a Muslim.

So I fogive these people, I just need treatment.

 

Sahfire.

 

I have Parkinson's disease and have tried several dating sites.  Unfortunately, my luck hasn't been very good.  People run when they hear your sick.  There is a new site I found, that I want to share with you.  It is specfically for people with challenges.  It can be any kind of challenge, disease, etc.

I have recently joined, and have had some contacts already.  It has been nice chatting with others that have a challenge like I do.

The site is giving FREE Memberships (since they are new).

It is www.datingwithchallenges.com

I hope you enjoy it as much as I have.

Lisa

 

PS- Please don't bother to post a comment to say I am not being 'politically correct', because we all have different words we feel are correct, and are not!  This is a personal opinion, and I don't mind the word challenge at all, and respect whatever words you choose to use - Thank you

  Hi There!  I cannot pretend to have answers for you but I would like to let you know that you are not alone.  It sounds like you are in real need of some support directed specifically toward you and I can relate.  It seems to me that every time I seek an appropriate place to get support or just vent about the trials of caring for family members with mental illness I end up as an outsider listening to the specific problems of the mentally ill themselves.  How can caregivers such as ourselves be candid about the feelings and problems that we experience when we have to  concern ourselves with offending those suffering from the same illness or disability that our loved one has?  I end up unable to get support because every time I seek areas of support dealing with mental illness I cannot be candid and graphic about what I deal with.  I recently tried to join a local group in my area only to find out that discussions were centered around the "consumer" which is a nice way of saying "the mentally ill person".  How can I sit in a room with people who suffer like my loved ones do and tell them the horror of what happens to me every time they go off their meds etc.  I cannot.  The medical professionals are not much help for cargivers in that they may give you a patronizing smile and say something like "just keep doing the wonderful job you are doing.....blah..blah.."   In the meantime the caregiver might be having some very uncharitable thoughts about the price being paid for such wonderful care......

 

I hear your anger and if you are anything like me you might need to find an "healthy" outlet like walking or doing exercises until you burn off some of that excess adrenaline.  Otherwise you will end up with health issues of your own.  I look at it like this.  When you were born, your parents didn't look down on your beautiful face and say "Gee let's hope she becomes a full time caregiver for a loved one who has become ill, and furthermore let's hope that her life is changed and her dreams become secondary to the care of that loved one....."  There is no nice way to say that life has handed you a pretty poopy situation.  For what it is worth I have found that sometimes people who are codependant (including those that refuse to deal with health problems) may need to become a bit uncomfortable so that they do what they should/need to do.  Also, you will not be able to help anyone if you fall apart yourself, so if moving heaven and earth to carve out some time for yourself so that you can put together a plan, then make it so.

 

I'm actually really upset for reasons not unlike your own, and I welcome your thoughts and anyone else on this issue.

Your would think that lightening does not stike twice in the same spot, but I have found that when it come to mental illness it does indeed.  When I was born (last of five) my mom was fully involved in an episode of paranoid schizophrenia.  I was raised by this lovely woman and know her and life as she presented it to me.  I am 44 and continue to suffer the cost.  My entire family has become knumb and does not want to deal with it.  My mom is not alone.  My sister and my brother, and now at the tender age of 21, my son has unfortunate signs of "going there".  I am heartbroken.  There is not anything that has to do with mental illness that I have not felt.  I have given up my career, my safety, my dreams, my own well-being, etc.  I am a walking dictionary of whatever you want to know about mental illness.  Despite my efforts toward education, I have found that the mentally ill people in our society are largely ignored.  We spend money on sexy things like male hard on and hair growth, but we continue to treat those with mental illness like a general malady.  The drugs and attitude in the US amount to throwing something against the wall, and if it seems to work on a rat, them give it to the mentally ill.  For examlple, why do we give powerful drugs like Dilantin and the like to epileptics, and what the heck, mentally ill foks also.  There is no money nor romance in the people that roam the communities and the illness that afflicts them.  We are stuck with the limited drugs and knowledge that remain unenlightened when it comes to mental illness.  The primary problem is that patients do not wish to take their medication.  We hear it on the news every day.  Why?  Because it makes them feel really bad, and in the scope of their world it is better to feel the high of mental illness then the medication.  I get sick of listening to the news report sof some unfortunate person with mental illness that is killed by law enforcement because they would not listen to commands.  Recently a deputy here in my home town shot a mental patient who was in a tree and refusing to come down.  Official reports declared that she had confused her taser with her gun OOps.....I am sick of playing games trying to get help for my family members.  As a society we need a better way of helping the mentally ill, other than tackling them and dragging them in to an incompetent treatment facility.  We need to set up a system that allows for family members to go on record (false claims prosecuted with major consequence) and state that a loved one is mentally ill and they fear for their well-being.  At present in my state of Washington, the system waits for what they call "escallation".  For the average person this means that we are waiting for the ill person to do something that is entirely unacceptable by society.  To people like me who have dealt with this their entire life it means this simply.......we are wating for them to hurt someone............oh they say that it includes "huring themselves or others."  I can guarantee you that a mentally ill person will get around to hurting someone innocent before they will look like someone from Etheopia (self slarvation).  I take exception to this policy, and despite my efforts the system will not help me until my family members hurt someone, and indeed they do.  The problem is that the average citizen does not know that they are sitting ducks for such a stupid system.  Believe me that it has to do with lawyers and the fact that no one wants to be involved in a lawsuit for incarcerating or holding a person against their will when mental illness is not clearly proven...  The problem is that innocent people must pay to meet this legal standard that results in taking  a person against their will.  We are all sitting ducks.  My family tends to turn on neighbors, but complete strangers will do.  The harm and trauma that happens to  innocent people in the path of the mentally ill is squarely at the feet of the legal system and the ineffective mental health care system that we have in place in this wonderful country of ours.

 

At present my sister has been fully delusional for over a year and I have stood on my head to inform her caregivers.  The present state is that we are waiting for "escallation"  as she becomes incresingly paranoid about her neighbors etc.  I have seen it before, and my mother has been lucky in that her assaults on others have not resutled in bodily harm. (post hole digger into the side of the mail delivery truck, assault on a complete stanger next door, rocks thrown at passing cars at an intersection etc........).my sister is a hard body standing at 6'2" and I know that she can cause some real trouble.  Her doctors do not listen to me, in fact a confidentail letter that I sent them a year ago was "shared" with her in a session thus removing my ability to retain inside insight into her behavior.  Her doctors with all their creditials forget that it is not merely us that deal with her, they share the road, the stores, the community with her and so do their families.  Where is their head when I am trying to tell them that she is a walking time bomb.  Oh, we'll just discuss this in a session and then I will go play golf and forget it.  They do not think that while they play golf, my sister is confronting their wife and children at the grocery store.  Pity they distance themselves becasue truly we are all in this together and we need to figure out a system that works.  We need to be able to get help for the mentally ill before an innocent citizen is harmed and thus meets their legal standared of proof for mental illness, but more importantly their legal standard of proof for holding someone against their will without risk of lawsuit.  The public is paying for this legal standard and I am speaking out.

 

A year and a half ago my city did away with a  support group for mentally ill.  My mother was in this group and consequently she stopped taking her meds the minute that she heard her accountability was gone.  Within seven months I was pleading with law enforcement and the mental health officials to "pick her up".  They did finally after a major traumatic show-down on Memorial Day.  The police gave me dirty looks as they did the work for the mental health officials who were not available.  Clearly these deputies need to be enlightened as to what a human is capable of doing regardless of their age.  I have seen it and yet they treat me as if i want this horrible treatment of my own mother......NOT

 

Caregivers of the mentally ill are largely forgotten and most certainly the community does not wrap their arms around us.  We battle every day the demons that afflict our loved ones and the system that has failed them, and the community that is fearful of them.......we are alone.  As a culture, when will we wake up and realize that mental illness is like any other illness and deserves the same amount of resources in the search for effective treatment?  As for the caregivers, well good luck, and perhaps you can vent like I did just now.

 

Hope4us

Hi there.  I am Lisa from New Zealand.  I have Spina Bifida and had surgery this year for a bone infection.  I have been off work for 6 months and going to go back part-time next week.  I have just started walking and finding it pretty painful.  Is there anyone else in a similar situation?  It would be nice to talk to someone who is in the same boat! 

 One crying in the desititution of opression.
One lying in wait for the vultures to attack.
A trickle of blood from wounds on his head.
Let to die, no hope as the vast wilderness swallows him up, not to be seen or heard.

He has crawled toward the edges of civilization until his knees and elbows are bloody and sore.
He has pushed with his feet to gain every inch.
The oasis is just over the horizon.
The door to his rescue, just beyond reach.
A stone's throw from misery, a curtain dividing life from death.

He can hear the faint voices from afar, but has exerted all of his energy to reach the horizon.
He is hungry, thirsty and in grave pain.
He fights the vultures from destroying him.
He tries to block the heat of the sun from his face.
He wrings sweat from his garmet to moisten his lips.
He catches a grasshopper to consume, but has no affect.

He prays to God that he will be rescued.
He lets out one last cry for help.
His salty tears roll down his face as he thinks of his family.
He gulps, but can't swallow because his mouth is so dry.

He tries to crawl another foot, but collapses on the hot sand.
He later awakes, and still the vultures are attacking him, he begins to smell death.
He wants to die, but not this way. For he knows he must suffer yet a few more days which will seem an eternity.

He tries once again, he musters to strength to get on his feet, but his feet are bare, bloody and are burning.
His legs are like rubber, his body battered and bruised.
Just a few more miles to go, but so close and yet so far.
His energy is depleted, his will diminished.

If they could just hear his cries, those who are just over the crest.
For they are happy, eating, drinking, and have shelter.
He would give any thing for a glass of water.
Yet it is all so far out of reach.
The night falls once again, and the chills of the desert overcome him.
He doesn't think he will make it through the night.
Shivvering and cold, thirsty and delusional, he begins to hallucinate.

He wakes up with the sun peeking over the horizon, where civilization thrives.
How will he get there? How will he survive?
He cries our with a small queit voice, barely able to speak.
He sees a figure standing over him, telling him to press on.
He immediatly thinks it's a delusion. He closes his eyes, and then opens them.
The figure is more clear, a man in a robe, encouraging him to continue on.

He says he does not have the strength. Soon, the entity is gone.
He wonders, was this an angel of God, or his internal dertermination to continue on.

He sees his wife and kids, and cries.
Where is that angel he wonders.
Where is my rescue?
He tries one last time to stand, to no avail.
He falls back to the earth, and realizes it is over.

But then once again, he hears a voice saying to him, continue on.
He tries to crawl on his belly, puling with his elbows.
They are bloody still, and his knees.
He realizes he has only moved about one foot.

He collapses one last time.

Who shall rescue him?
Who shall hear his faint voice?
Who shall pull him up out of the sands and protect him from the vultures?
Who shall give him hope?

Any One???

I have a woderful brother who is only 52 years old and has Ankylosing Spondyitis.He was told in his early twenties that things would not get any better.He thought they would.He did not belive the doctors He also did not grasp his condition nor did we at the time.He started to get really sick his walk got worse and the pain was allways there .His bones fuze together thats what this does.To make things worse he could no longer work at his job.He lives in a very depressed area so theres very little work.He can harldy move tody and the pain is great.My sisterin law works and they bring in 18 thousand a year.She has insurance but it does not cover all the medical.They have had to have surgeries and medincines and etc.They live in a home that needs tons of repais.Without a little help when the family can afford they could not get by.Lots of time they do without.Most important HEwas turn dow for disability becuase he did not work enough to pay in.They tried and tried to get it but was refuse several times.I think there has to be a way for this to be a crime when prisoners get to have more options than he does.Im am sad hurt and mad at the same time at our government.I wrote Dr.Phil several times but never heard from him wondering what I can do.I even contaced the foundation and got a letter back and they wanted a donation.Well that is what I had to say and people who have disabilities my heart goes out to them but they just want a chance and they want I think a challege in life.My brother says I don,t have the problem they do .They just don,t getit do they

Geez, i really had a knee jerk reaction when I read your share. There is a serious problem when the government will not help a person that is legitamitly in need!

I am curious as to were you live.

How calous of that foundation to ask for a donation from someone who is seeking help! Geez, hello, any one in there?!

Hun you sound like a doer, and that is a great thing.

Get in Touch with the media and share you story with them, and have a web site available to people who can log on and sign a petition.

You are trying to be a voice, however, it is like a whisper, and is not being heard.

Please make a site with your brothers stroy and his struggles, and this lack of compasion and help from the government, and let the people know that you are trying to make changes not only for your brother, but for people in desperate circumstance due to illness and disease that is beyond their control.

Write to Dr. Phil again, or Oprah, get some public attention brought to this.

Get in touch with your local and national media.

Get your brother and sister in law involved as this is as much for them as it is for people in similare situations.

Get in touch with advocated for people with disabilities.

Stop whispering and start yelling hun, this is so tragic, I really hope that you can find the strength and courage to advocate for your brother and people like him, My heart goes out to you and your family.

Keep in touch.

Hugs

Tammy

 

 

I keep getting told we there is nothing this office can do and I have written Dr. Phil and Oprah several times.No one person returns calls or emails so I keep raying.I have sent a picture to Dr.Phil also.I wrote the govenor of Illinois and the Senator and no they can,t do a thing so I keep praying.It is all just a promise and nothing never happens .