the abused patient
it took me a little over 30 minutes to clean and change the dressings on his wounds. the biggest one, on his sacrum, was as big as a really large grapefruit. he also had one on each hip, half the size of the biggest one. on both, his bones were exposed.
his daughter was his primary caregiver and he lived with her. the fact that he was brought to the emergency room with wounds THAT bad and THAT big was a red light to everyone. to everyone, but me.
i am not wired like everyone else. for the sake of not demeaning myself, i will not say upfront that it is because i am stupid that i did not suspect anything out of the ordinary.
if i may, i will use my culture as an excuse. in the philippines, the norm is to take care of the older family members until they breathe their last. i am not saying that everyone back home is overly enthusiastic about the idea of caring for a dependent elderly, but everyone is sort of expected to hopefully develop a sincere purpose in doing it. there is no law requiring children to take care of their parents/grandparents at home, but it is an unspoken and noble way of showing love, respect and gratitude towards them.
it is in that premise why i say i have never really entertained the idea that it is possible for a child or any family member to consciously do, or not do something that can harm the older ones. i may have been aware of this reality, but unfortunately, i will admit that i do not really take it as real. growing up in a place where high regard for older folks is extremely encouraged, harming them in any way is simply unthinkable. it is not something i just think of people are capable of doing that easily. this makes me clueless in spotting a possible abusive caregiver, because sadly, i literally do not have a clear concept of this whole abuse issue.
anyway, please don’t get me wrong. even if i am strongly influenced by our culture and i completely support the idea of taking care of loved ones at home, i also totally understand the idea of sending a loved to live in a nursing home. the reality is, there are a lot of acceptable reasons why a person who needs total care should be taken to a place where he/she can get that care rather than stay home and be neglected. every family’s situation is unique. at the end of the day, the most important thing to consider is that we respect our loved ones by trying to provide the care they need, whether it is in our own home, or anywhere else.
in retrospect, when i saw his wounds, it never occured to me that there was a possibility of abuse. if the nurse before me was thinking like me, APS (Adult Protective Services) would have never been contacted, and the whole investigation would have been delayed.
the night i took care of him was the night after the investigation. i was asked by the charge nurse if the daughter’s presence bothered me, and if i mind if she stayed for the night. honestly, with the way she was sobbing on the chair at the corner, i did not have the heart to ask her to leave. i don’t know exactly why she was crying, but there was that apologetic look on her face that almost made me conclude she was indeed guilty. for a moment, i actually felt sorry for her.
the next night, i saw a note on the chart, addressed to the case manager. “per APS, this patient will not be discharged to his daughter’s home.” for the first time in many days, unlike the routine we’ve seen, she didn’t show up. i wondered if one of the insinuations were true, that she will never be allowed to see him again.
i don’t know. this whole situation bothered me in different levels.
first of all, i felt irresponsible and stupid for being so ignorant about elder abuse. when am i going to adapt to all these new things and be a real patient advocate?
then, there was that unexplainable sympathy i felt towards the daughter. i mean, let’s just say she is truly guilty of neglecting him, is that enough reason to just take him away from her like that? worse, to not let her see him at all?
then, there was that rumor people were talking about…that maybe, she was just taking advantage of the situation by claiming monetary benefits for being his caregiver, but she is not really concerned about his well being. i can’t really wrap my head around that thought, so let’s not even go there anymore.
then there was that question of why is it so hard for us to admit that we need help? why did the daughter feel the whole responsibility of acting like a superhuman by doing it all, on top of being a primary caregiver?
then, the confusing thoughts…
now that APS will take over, will the patient be better off?
how can he be better off in an unfamiliar place, without anybody he knows?
by doubting the system, am i actually saying that i believe the patient will be better off staying with his daughter?
why is it that although i can’t get over the fact that it was heartless for the daughter to let this thing happen to her father, i can’t seem to honestly accept the decision of APS to take him away either?
i have heard a lot of horrible stories of abuse in nursing homes. it makes sense to me why there are people who are strongly against putting their loved ones in one. i guess my final question is: if we truly love our parents or grandparents, where do we stand in this situation? to act heroic by taking care of them at home, risking the possiblity of neglecting them; or to send them to a facility, risking the possibility of other people neglecting them? how do we make that decision? how do we live with the consequences of our decision?
somebody needs to help me clear these things up in my head, because i have given up on understanding what i really feel about it.
i don’t even know what to think anymore.
There are a lot of things that need to be taken into consideration here.
First,there is a huge difference between “neglect” and abuse, especially when it comes to a family member that may not be educated about such things as decubiti(bed sores)what causes them and how they are treated etc.
Neglect is not necessarily abuse unless the person is aware of the possible outcome of their actions, or it is done on purpose. If the daughter was aware that what she was (or wasn’t) doing would cause harm, then it is abuse.
Was the daughter simply trying to do the “best she could” with what resources she had? Or was she truly in it for the money, or was never around?
The other thing to realize is that, although APS may have said the patient cannot go home with her, it doesn’t necessarily mean she can’t visit him in whatever facility he is released to.
I have taken care of many people where APS has stepped in like that because the families simply did not have the mental capacity or the physical means to take care of their loved one. These families were still allowed to visit, and a lot of them turned out to be very caring/loving people that found themselves in the middle of an unfortunate situation - their greatest crime being not knowing when, or who to ask for help.
I have also taken care of people whose family members were not allowed to visit because they were without a doubt abusive.
As nurses we often believe neglect and abuse are synonymous with each other because we are educated, and aware of the outcomes of our actions. But, if a family member is truly unaware of the proper way things should be done, or the consequences of not doing them, are they really being neglectful? Would they have done anything differently if they knew how?
It all comes down to knowledge and intent.
Comment by PD Warrior — August 10, 2007 @ 4:49 am
What you describe sounds like flat out abuse. I know how fast bed sores can happen, but any caring person would take their loved one in for treatment before it became severe. Please don’t beat yourself up for being human. You are still human. There are plenty of nurses (and doctors) around the blogosphere that are so jaded and frayed by the difficulty of the job they sound cold. And cold hearted. This is no easy dilemma, and I have to live with the fact that I put Ardis in a dump of a nursing home last year where the nurses and aides just flat out sucked. One night, I came back late to tuck her in and found her in a different colored diaper. They had changed her without wiping her up! There was dried feces in her vulva! I still fume when I remember that. Grrrrr! They made the mistake of thinking I was gone home for the night. To me, that was abuse, and thanks to the state of Colorado, that nursing home no longer exists.
Comment by Bobby — August 10, 2007 @ 10:37 am
The dilemma here faced is when do we say that the caregiver has gone from being THAT to a care abuser? I sadly had to witness a similar situation with my grandmother. As she grew older it became more and more obvious that she would require a round-the-clock assistance even though she still had mobility and slowly dementias set in and finally at the age of 98 she passed away after having had a major stroke.
When she was taken into the hospital with the first stroke, even though she had slight bedsores that the family had tried to care for as well as possible, she was adamant that she did not want to die in a hospital but in her own bed. What you do with a person like that? Where do you draw the line between your responsibility to care for a patient and their responsibility to pick with dignity the way that their life ends?
Even with dementia it was obvious that my grandmother clearly knew she was in a hospital and was emphatic about wanting to be home in her own house. Her wishes were followed and within three days she had a major stroke that paralyzed her ability to swallow. Her trip from the home this time was to hospice which was not a decision that I was involved with but one that I know she despised till the moment of her last breath.
The people at hospice were fantastic and I sadly had to deal with them two years later when my mother died quite suddenly of a rapid onset cancer.
Question: Where is the balance between family love and human responsibility? When we figure that out we will become a more civilized society especially if we are willing to act on what we’ve come to appreciate.
I do not believe anyone in the healthcare industry should beat themselves up because of the anger they feel at seeing someone they feel did not receive the level of care that they deserved or could have been afforded.
Comment by Jeremy — August 10, 2007 @ 2:20 pm
A patient develops bedsores at home.
A patient develops bedsores in an intensive care unit.
Both situations occur with unfortunate frequency. What’s the difference?
Comment by shrimplate — August 10, 2007 @ 8:08 pm
In the ER, we see lots of situations that have a similar feel, although no where as extreme as you mention. It’s just like the families that bring in grandma with the dementia, who cannot move, see, or have any quality of life, and insist they are a full code. Sadly, many times it is simply families do not want to lose the social security income they would lose if they put their relative in a care facility, or if they passed away.
It is a horrible way to look at it, but it often is at the base of these cases.
It is interesting you mention your heritage. I had a long discussion with a nurse in my BSN classes who is from the Philippenes, and we talked about how “nursing homes” are almost unheard of there. I think it says a lot about the American culture that we think so little about “dumping and forgetting” our older relatives; but in the same breath, others are exploiting their elders for monetary gains..
Comment by Disappearingjohn — August 11, 2007 @ 4:39 pm
This is quite new to me. I mean. the thought of harming elders?! I guess it’s in our culture, your right. I didn’t even know that an organization such as an APS exist! Sad, but I guess there are people who just neglect their elders. This is why I’m proud to be a Pinoy in this asect, we care so much about our elders to assure them a happy passage in their old age.
Comment by Ferdz — August 12, 2007 @ 6:41 am
Being a fellow FilAm, I definitely get where your’re coming from at the first part of the post. Taking care of elders is an expectation and something that I will have to be dealing with sooner rather than later with my parents.
With getting APS or children services involved, I too, at times, wonder whether I’m doing the right thing and whether the patient will actually be better off. How can it be worse? Well, I’ve seen older people and young children be victims of bureaucracy with an ineffective/overloaded court system and social service system.
I tell myself that in the long run and in the big picture things will be better for them. But, making that first phone call, and watching the chaotic short term consequences can be troubling sometimes.
Comment by Doctor Anonymous — August 12, 2007 @ 11:58 am
How can you live with yourself knowing you have abused your parents? My mom died of end stage alzheimer’s May. I took care of her 24/7 in my home for the last decade of her life. The last couple of years were so hard, on her, on me, on everyone in the family. It almost destroyed my family. There were days I thought I might be going nuts, but you do NOT abuse or neglect your own parents. There were times I had to go into the bathroom and literally stick my head under the facet and run cold water over it, but I think that is certainly better than the alternative. There is just no excuse for this.
BTW, Something for you at my blog…:)
Comment by cathy — August 12, 2007 @ 5:31 pm
As health care professionals we see all walks of life. Family dynamics that we just have to shake our heads at. Like one of the comments “bedsores at home or in the ICU” yes they happen. I wonder if his daughter even had the wear with all to know what was going on. Is that her fault? Was the man not able to speak? I wonder if he even told her he had a sores? I have had some patients come in with sores..and they didnt tell their families because they didn’t want to be a burden…I am sure there is more to this story…but it is sad all the way around.
Great post!
Comment by smalltownRN — August 13, 2007 @ 9:58 am
Another tough set of questions with no easy answers.
Comment by The Curmudgeon — August 13, 2007 @ 10:50 am
[…] i mean, all proofs point to her neglecting her nonverbal, contracted dad. there were bruises of different stages oh his rib areas, his wounds were never attended to that they became so gross. he was also moderately malnourished. […]
Pingback by the daughter, the bloopers, the award » about a nurse — August 13, 2007 @ 7:51 pm
The Hindus have a saying in Sanskrit, their ancient language. It accords respect to entities in the following order: Mata, Pita, Guru, Deva
Meaning? Mother, Father, Teacher then God. Honoring the first three is akin to honoring God.
I don’t know the answers. I wish I did, but I don’t. All I know is that in a few years, I will have to face the same situation with my own parents.
No easy answers…
Comment by Spook, RN — August 17, 2007 @ 7:50 am
I had a patient last week w/shear injuries both hips, bilateral heels w/escar and wounds. End Stage Renal Failure on hemodialysis. Daughter-in-law takes care of at home. Wounds infected w/MRSA and other organizm’s, also w/positive blood cultures. DIL called ambulance because of stroke symptoms…lost ability to talk and flaccid on r side. Pt will be going to nursing home due to family unable to care for at home anymore. Sad, DIL comes every day and stays until 3 am and is before end of shift at 7 am. The culture here (Rio Grande Valley, near Mexico) is also to keep the elderly at home as long as possible. There is Adult day care’s all over. The problem is that no body teachs these family members the importance of turning their loved ones, of off-loading the feet w/pillows and so forth. Often the care-giver is much smaller than the patient, and doesn’t know the body mechanic’s needed to do good care. Maybe there should be care-giver classes offered free to teach these things.
Comment by gingerjar — August 17, 2007 @ 9:04 am