Tuesday, June 23, 2009

Families Against Nursing Home Abuse - Over One Year

It’s been over one year since we first got the phone call that Mom “may or may not, be a victim of what may or may not be abuse.” It’s been over 12 months….over 365 days…..over 8,760 hours……over 525,600 minutes….over a life time ago.

How I long for the days before that, when I was in total ignorant bliss, where I lived in a naïve world in which people took care of one another, and would not intentionally hurt anyone; especially someone so vulnerable as Mom. I long for the days when visiting Mom didn’t mean confrontation or anxiety. I long for the days when I could remember Mom as she was when I first met her. I long for a time passed. I long for a time that I cannot go back to, and that, at this point in my life, is over shadowed by the knowledge of what was done to Mom by a group of people, in a place, that I trusted.

I thought when Mom passed away, “it” would be better. I thought that when she died, that I would feel better. I thought that when she was laid to rest, so would all of my anger, and sadness be laid to rest. I thought that when Mom no longer was in pain and fear, my pain and fear would go away also. I thought when Mom’s agony ended, so would mine. It didn’t.

I think a lot now. I think about Mom, and how she tried to tell us what was going on. I think about how we should have done more research into nursing homes. I think about how we should have questioned things more in the nursing home. I think about how we should have demanded better of the nursing home. I think about how trusting we were when placing Mom in a nursing home. I think about how much we didn't know. I think about why someone would do this. I think about the other victims, their families and friends, and how awful it is for them. I think about sadness. I think about guilt. I think about forgiveness. I think about anger.

I question things now. I question what kind of world we live in. I question respect. I ask how it is that we have lost respect for our elders; for people; for each other. I question how the proprietors, administration, supervisors and workers lost their respect for the people in their care. I question how it is that vulnerable adults became dollars and cents, and not human beings. I question our response to people’s pain. I question why that pain is minimalized……..literally dismissed…….by people who claim to be advocating for the vulnerable. I question why the laws weren’t better equipped to prosecute. I question why our law enforcement wasn’t better trained for this crime. I question why the nursing home didn’t have safe guards in place to prevent this crime. I question why we don’t have the resources to get information before making such huge, life changing decisions as putting a loved one in a nursing home. I question why the neglect, abuse, and deaths of vulnerable adults is readily accepted and then dismissed. I question why the law makers aren’t listening. I question why the government looks the other way. I question why all these advocacy groups, apparently more then 50 groups in Minnesota alone, can’t seem to make a difference. I question why I can’t seem to get anyone’s attention. I question why so much of the community doesn’t seem to care about what has happened in our midst. I question why so few seem to get what this is all about.

This is about the anguish of the victims. This is about how a heinous crime effects people who contracted one of the most mean spirited diseases known to man, and can no longer speak in what we consider cognizant thought. They forget words; they lose their train of thought. These wonderful people forget how to walk, and then forget how to talk. Because they have forgotten how to pick up a glass, they become dehydrated. Because they are no longer able to use a bathroom, they must lay in wet and dirty incontinent attire, and then come down with severe bladder and kidney infections time and time again, because no one has time to give them a drink of water when they are thirsty, or change them when they are dirty. Eventually their brain does not communicate with their body at all. But one thing they don't forget; Feelings. Just as with anyone who has been a victim of violence, these people are traumatized. But because we don’t understand this disease or what has happened to the vulnerable with the disease, we don’t even consider treating them with more kindness, or being a bit more careful in how we “come at” them to do their daily cares and helps. We don’t consider that they are in as much distress as any woman who has suffered abuse, or any child that was cruelly abused, or any man who has come home with Post Traumatic Stress Syndrome. We don’t understand that how we approach them triggers memories. Horrifying memories that cause them to scream, and fight, and cry, and beg the worker to not do that to them. It is not even a remote consideration to have a professional psychologist just sit and talk to them in a calm and caring manner. And because we are not educated enough to realize what is happening to them, we blame them for becoming behavioral problems, and send them to doctors who medicate them so that life is easier for the people entrusted to take care of them. I question if anyone will care when someone in a nursing home abuses me. I question why I can’t make this stop

I wonder about the future. I wonder how many more elderly have to suffer. Each month I wonder how much longer……how much longer before the lawmakers safeguard the PEOPLE, not just the money. Each week I hear of another families struggle to have their loved one treated with respect, and I wonder how much longer before administration in any particular facility will stand up and say, “This is not right! It has to change!” Each day of my life I wonder how many more families will learn of their loved ones abuse in a long term care facility and will have their lives, and the lives of their families changed forever. I wonder how much longer I can do this. I wonder how much longer my life will remain in turmoil, pain and conflict. Members of FANHA support group and family and friends attending Criminal court hearings, letters and phone calls to legislators, celebrities, news programs, and talk shows, decisions to be made about to litigate or not to litigate, and then finally, someday actually be able to grieve and put Mom to rest in our hearts. I wonder when this will all end. I wonder if I will ever be able to forgive. I wonder if I will ever not be afraid of a nursing home. I wonder if I will ever trust anyone again.

How many more will suffer neglect, abuse and death? The National Center on Elder Abuse estimated that more than a million (1,000,935) seniors suffered abuse or neglect in a single year. That’s approximately 2 victims every minute of every day, of every year. The sad part of that is…….. over 1 million victims is probably under estimated. Most abuse goes unreported and uncounted. I’m not sure there are answers to any of the other questions and ponderings yet.
I find myself wishing….and not wishing. I would never wish any of you or any member of your family, to have to go through what I and many others, and more each day, have to go through, for who knows how long. It is a life changing experience that absolutely no one on this earth deserves going through; especially the victims who have spent their lives fighting in wars to keep our freedoms, in the most wonderful country in the world; who worked hard, paid their taxes, supported and raised their families, and then had the audacity to get old and come down with a disease that makes "normal" people think of them as useless, worthless, inconsequential, and not worthy of any respect. Absolutely everything about this kind of abuse and neglect of vulnerable adults is horrifying. I can only work hard, wish much and then pray constantly, that policy, procedures, training, and laws will change enough to begin to prevent this kind of neglect and abuse so that you and your loved ones will never have to go through what we have. I wish people cared more.

As an advocacy group, Families Against Nursing Home Abuse (FANHA) is trying to get the community to understand what happens to the victims; and the fall out to their families and friends. What we are trying to get the community to understand is that changes in policy procedure and law, have to come, or this is what we can all expect our last years on earth to be. We are trying to get the community involved so that they too, will contact legislators, and demand change.

I think. I question. I wonder. I wish. I advocate. I pray. Tomorrow, I will pick up where I left off today. I will make the phone calls. I will write the letters. I will work for policy, procedure, training and laws that will help the elderly. I will speak out when asked, and some times when I’m not asked. But always there will be one motivation pushing me to do what I don’t think I can do anymore; forcing me to continue down a path that I never wanted to be on; the memory of a woman who would have swallowed her tongue before saying something unkind; The memory of a woman who welcomed me into her life with open arms; The memory of a woman who never asked what I could do for her, but what I needed from her; The memory of a woman who never withheld love from anyone in her midst; Mom.

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