ARTICLE: Who Takes Care of the Caregiver? The Stressful Role of the Caregiver

Original design ©Melanie Neer

I thought the above illustration as appropriate as we caregivers DO need to be kind to ourselves

Originally Published on Yahoo.voices on October 5, 2007

As more and more of us in the baby-boomer age have discovered we are now facing the new role that we must confront, and that is to become the caregiver of our aging parents, a role that is far from easy. Naturally many of us hope, that as our parents grow older, and are reaching their seventies, eighties or beyond, they will age gracefully, without any complications, whether medically or emotionally, to contend with. That is the ideal scenario. But for far too many of us, this isn't the case, as was with my own mother.


Life with my mother, as I still lived with her, was far from easy in the last ten years or so of her life. First were the obvious emotional problems that seemed to have surfaced. Looking back, I believe she may have had emotional issues all along but they didn't become apparent until about ten years ago, when I began suspecting that she may have been suffering from depression, that got progressively worse as time went by. She had many of the classic symptoms of depression, mainly non-motivation or taking an interest in anything anymore. As her symptoms worsened, and I suggested that she get some psychological help. She did, but unfortunately she didn't benefit from this help. Why?

One is that my mother wasn't the type to openly discuss how she felt, whether medically or emotionally, not even to me, and I seriously doubt, she was capable of expressing herself to a virtual stranger, such as one in the psychiatric community. Also, since she didn't sign a proxy, at least not until the last few months of her life, and by then it was too little too late, I wasn't able to get involved with her clinical care, so in other words, I had no say in the matter due to those strict and stringent Hipaa Privacy Laws. It was unfortunate too, that her psychiatrist didn't catch on to her emotional problems, first of all, because he didn't see her on a weekly basis, as is customary in psychiatric field, but only every few months; also, truth be told, she was a great actress and could come across very differently to the outside world; only I saw her true personality.


It wasn't until March of 2006, a few months before her passing, that my finally signed a proxy. l then made sure I went with her, to what was to be her final visit to her therapist. I conveyed to her therapist about the severity of her emotional disorders and depression. It didn't impress him one bit, and even said to me, that my mother didn't look very depressed. My mother sitting next to me, had a radiant smile on her face, and all I could think of, this psychiatrist, was basing his pyscho-analytical diagnosis that my mother wasn't depressed due to the fact she was smiling?


You can imagine my frustration about this. However, I also did have private talks with her social worker, and she did indeed suspect what I had thought all along, that my mother did indeed have severe depression issues, plus as she put it, also had a variety of other personality disorders, ranging to possible bi-polar, to dementia. When I would go with my mother to visit her social worker, the two of us tried to get my mother interested in doing things again, to take an interest in something, like perhaps take up oil painting again, a hobby she had formerly once done with a passion in her younger years, or to join in any one of the activities that was sponsored by the hospital clinic geared for the elderly. Our suggestions went to deaf ears, as my mother continued to be unmotivated by any possible activity to get her going again.


Besides her emotional problems that I was witnessed to and had to care for, it was in the year 2005 that my mother was diagnosed with esophageal cancer. The discovery was quite by accident. For about two years prior to her being diagnosed with the cancer, my mother was doing a bulimic thing...yes, as soon as she'd eat, I would see her race into the kitchen, stick her finger down her throat to purge. Now at the time, I didn't know she had the cancer. She no doubt did her bulimia bout as it must have felt uncomfortable for her to eat, but at the time I thought, oh, great, another psychological problem.


And, you better believe I was trying to notify someone, anyone about what she was doing, but again, because of her failure to sign a proxy at that time, no one, not her doctors, psychiatrist, or her then social worker (a different one, from the one I got to know), would listen to me. It didn't help the fact that my mother was tight-lipped and not exactly telling anyone of her discomfort, except to say that she had a lot of congestion, so no one suspected her true medical condition. Each and every time I did try to alert professionals of what she was doing, all I would get from these people was that because of the Privacy Laws, my mother's clinical care could not be discussed with me.


It wasn't until June 8, 2005 that it was finally discovered as to the why of her bulimic episodes. I had to call 911 as my mother had passed out while taking a bath. She was out cold. I yelled at her, slapped at her face to bring her to consciousness, but nothing, thus my call to 911. After a week or so in the hospital and a battery of tests, including a mini-camera that went down to explore her esophagus, it was discovered she had a cancerous tumor. Now the real care of her came into view for me. My mother was an extremely stubborn person. When it had been suggested to her, after her being diagnosed with the cancer that she should go to a rehab/nursing home environment, to get her nutrition built up, and to undergo the chemo/radiation therapy, she wouldn't hear of it . She wanted to stay home and have me look after her. It was fortunate that the hospital in question, where she had been diagnosed was quite literally down the block and she was able to get her chemo/radiation therapy there, but as for her other care it was up to me. She had a G-tube inserted into her stomach, in which I would have to give her regular "feedings" of Ensure through it to make sure she was getting her nutrition as she couldn't eat anything by mouth.

She also was quite vocal, however, in not wanting any outside help, that is some kind of visiting nurse service that could have not only helped her out, but given me some kind of time off to myself to attend to my own needs. As I said, it was all extremely frustrating and stress producing to me, but I gave in, if anything to avoid the arguments that would have ensued every time I brought the subject up of outside help.


I suppose the main reason for this article and to point out and share all the difficulties I had in my own experience as a caregiver, is to perhaps give some kind of guidance to someone who is may also be facing the possibility of becoming a caregiver to an aging parent, and I'm hoping that you won't face the same problems as I had. First, of all, I was at least lucky in this regard, that since I didn't have my own family to raise I wasn't torn between my obligations of taking care of a spouse and/or children and of taking care of an aging parent. But I'm the exception, as this will not be the case with most people.


Despite all the hardships and demands on my time in taking care of my mother, I did manage to have some quality time out for myself on a daily basis. This is most important for any caregiver to prevent complete burnout and stress. Since my mother wasn't a complete invalid and was mobile, I took time off, usually by going out for a few hours, whether to do my own errands, or just simply take a refreshing walk, just to have that time to myself. I made sure I didn't neglect my own needs entirely and I also made sure that I had proper rest, sleep, and fulfilled my ow nutrition needs. Once my mother was able to eat solid foods again, I also had the benefit of the Meals On Wheels program which made daily home visits with a healthy, nutritious, balanced meal for the day. This gave me a little time off from constantly having to cook all the meals for my mother.


 It's almost ironic, that now that my mother has passed away, that it is only now that I'm finding out about programs geared for the caregiver, such as outreach programs and support groups that will help the caregiver be in contact with other caregivers so its members can vocalize the problems facing one who is a caregiver; this in itself can be therapeutic as knowing that others are going through the same concerns and stresses will make a person not feel so alone in this time-consuming and stressful new role that has been placed upon them. One can find support groups usually either in one's community, or one can even do a search on the internet. One really great website is Caregiver.com, which even has a discussion forum where people can discuss their challenges as a caregiver, and one can subscribe to their bi-monthly magazine, appropriately called "Today's Caregiver". 


Of course, there may come a time where it may become just too much for the caregiver to continue helping and providing entirely on their own their care of their aging parent, especially if their medical needs worsen, and this is when outside resources are a must. This may be anything from seeking the benefits of having a visiting nurse come to the home, to maybe having their parent go to some kind of adult day-care center, or perhaps short-term nursing home stays. This will give the caregiver some genuine time out for themselves so they don't have to take on all the responsibilities on their own. Finally, of course, may come the time, that one may have to think in terms of placing their parent in either a hospice, a qualified permanent nursing home or assisted living homes.


I hope this article will benefit anyone who in now facing the problems of becoming a caregiver to their aging parent. I invite the reader to visit any internet resources about caregivers, I have only listed two, but there are so many other websites that will be beneficial to the caregiver. All I know it that I sure wish I had known a lot of this material when I had taken on the role as caregiver to my mother.


Sources and information about caregivers:


1).Caregiver.com 



An excellent resource and includes a discussion forum and a bi-monthly magazine one can subscribe to, plus and e-mail newsletter:


http://www.caregiver.com/


2). womenshealth.gov 



 This website defines exactly what a caregiver is, and also defines caregiver stress and how to get help for it. 


http://www.4women.gov/faq/caregiver.htm#e



If one does a general Google search one will find a lot more resources to either help the “caregiver” or to even find caregivers that can help out.

ARTICLE: The Hipaa Privacy Laws: Do They Really Protect a Patient?

(Originally published at Yahoo.voices formerly Associated Content~7/15/2009)

ABSTRACT: While the Hipaa Privacy Laws are supposed to protect a patient's rights, in my mother's case they only hindered her from getting proper help.

CONTENT: (©2007-Melanie Neer. This article is the original un-edited version of the article that appears on the Medhunters Website)

During the years of 2005 and 2006, I had two addresses, my own apartment, and that of the nearby hospital. On June 8, 2005 my elderly mother was taking a bath late at night at around 11:00 p.m. Since my mother had the strange habit of falling asleep while taking her baths, I would check in on her on and off to make sure she was all right. Well, that particular night, that wasn't to be the problem, instead, she was having difficulty in getting out of the bathtub. Now my mother wasn't a heavy-set woman, in fact the opposite, she was thin. But when I attempted to help her get out of the bathtub, I just couldn't lift her, it was like trying to lift dead-weight.

Knowing that my neighbor, who was bit of a night owl, was still awake, I left the apartment, and rang her bell to ask her if she could help me with my mother. I had to wait about ten minutes, as she wasn't properly dressed, before she could leave her apartment and assist me. By the time the two of us got into my apartment and into the bathroom, to my horror I saw my mother was out cold, she had passed out. I yelled her name, slapped her face to wake her up, but nothing, no response, so I made a dash to the phone and called 911. Within about fifteen minutes, both a police car and an ambulance came. It seems that even the cops and the paramedics were having difficulty in bringing my mother back to consciousness but finally they were and got her out of the bathtub and helped her to a nearby chair for her to sit down for a few minutes then helped her while the paramedics then strapped my mother in one of those portable chairs to bring her to the ambulance. Both my neighbor and I went with my mother in the ambulance which was to take us to the hospital's ER.

The ER that particular night was crowded with other emergencies, but it was evident that my mother would have to be hospitalized for what may have been a mini-stroke, though I was never exactly told just why she had passed out cold like the way she did. It was about eight hours later that she finally got a room, and my neighbor and I went with her to her hospital room where doctor after doctor came in, as well as a multitude of nurses, asking both my mother and myself all those questions that are always asked whenever a patient is admitted to a hospital.

I have to admit, I was rather vocal in expressing myself to the doctors and nurses about my mother's condition. It had nothing to do with this particular incident, but due to my mother's deteriorating condition, not only medically, but more particularly her emotional and psychological problems that she had had long before that 2005 June night, and which I feel weren't being properly treated due to the Hipaa Privacy Laws.

I will never know the full extent of my mother's emotional or psychological problems as she, in my opinion, was never properly diagnosed. I did know, however, that at least one condition that became quite apparent to me during the last few years of her life, and which was most noticeable by around the year 2001, was that she was demonstrating all the classic symptoms of severe depression. She lacked any kind of motivation, took no true interest in anything, not even the simplest of things, such as reading, or watching TV. At one time, my mother had been quite an accomplished artist and loved to paint in oils; now she didn't even want to do the most simplistic of pencil sketches. Little by little I noticed that she didn't even want to talk to any of her friends on the phone, and was beginning to alienate herself with any contact with the outside world unless it was absolutely necessary. When she did, however, she was the supreme actress and appeared completely "functional".

I therefore, suggested to her that she seek professional psychiatric help and it just so happened that there was a clinic over at that very same hospital she was to later be admitted on that June 2005 night. She agreed to it and began seeing not only a therapist at the clinic, but also a Social Worker. However, there was one big major problem that was to arise and impeded any true help that she may have benefited from. My mother never consented to sign a written authorization that would have allowed me any disclosure of not only her protected health information (PHI) but more importantly her "Highly Confidential Information". Little did I know at that time, the battle I was in for in trying to get my mother the proper help she really needed.

Now, while everyone connected with any health care profession is of course aware of the Hipaa Privacy Laws, which was initiated the the U.S. Department of Health and Human Services and as the Health Insurance Portability and Accountability Act of 1996 and later revised several times, I seriously doubt if anyone has read the Laws in their entirety. While the Summary of the Hipaa Privacy Law, published by the United States Department of Health & Human Services (HHS) is a mere twenty-five pages long, the Hipaa Administrative Simplification Regulation Text (D18_Privacy_and_Security_Final_Rule.pdf) also published by HHS is one-hundred and one pages long, and in either case, one has to be, as the saying goes, a Philadelphia lawyer to understand. Neither make for enjoyable, light bedtime reading. Yet believe it or not, I was to become fairly familiar with the Laws since I was rather desperately trying to get proper care for my mother's medical and emotional/psychiatric conditions. (1)

From the years 2001, when my mother first began her therapy, I was trying to have a voice in my mother's care, but without any luck. I knew, for instance, that my mother wasn't exactly great in verbalizing how she truly felt, not even to me, her own daughter, so I seriously doubt if she was revealing her emotional issues with a relative stranger, her therapist or Social Worker. So, the bottom line was that any true psychological problems remained hidden. The only person who recognized that there were a lot of emotional problems that my mother had was myself. I was the one person who could tell just what was going on in my mother's world, and here I was, not being able to say a word because of those Laws. Another frustrating factor, was that unlike most therapists, who see their patients on a weekly basis, my mother's psychiatrist only saw her once every few months. How can a therapist therefore make any kind of proper diagnosis of any emotional problems with such infrequent visits?

The real clincher however, came about, when around the year 2003, my mother began losing a lot of weight. My mother had formerly always had been overweight. Now I was witnessing a drastic weight loss with her, and with good reason: my mother was exhibiting bona fide bulimic behavior. You better believe I tried to alert anyone I could about this known psychological problem; her medical doctor, therapist, Social Worker...anyone! I even wrote very long, lengthy letters, not only to her therapist, Social Worker, but also to the Executive Director of the hospital. All I ever got back, were short, terse replies from the Director of Patient Relations, such as:

"Thank you for your letter of February 3, 2005, regarding your mother.
Please be advised that under the HIPAA Laws and NYS Patient Rights, your mother's clinical care may not be discussed with you.
Thank you for sharing your concerns with us..."

It was then, that due to my sheer utter frustration, I began looking on websites and reading up on the Hipaa Privacy Laws. I began to understand that protected health information (PHI) for the most part could often be "disclosed" to other third party sources, and in particular, relatives, close friends and other caregivers without written consent or authorization. It was the Highly Confidential Information, such as that pertaining to psychiatric cases that could not be disclosed to any third party without a signed, written agreement, like that of a proxy by a patient. In other words, a person could be a virtual siamese twin of a person, but without that signed agreement, information could not be disclosed.

And that was were a lot of frustration came. You see, I didn't exactly want information disclosed to me, I wanted to have the ability to give voice to anyone and everyone who would listen to me about my mother's true emotional conditions acknowledged and known. Who who better than myself, her daughter, who lived with her and saw her behavior on a daily basis would be able to provide such information? However, I was getting nowhere.

However, this is where the hospital was wrong, and maybe no doubt, may have misinterpreted the Laws. Now, I was starting to write letters to various agencies connected with the Hippa Laws including the Office of Civil Rights, and the National Alliance for the Mentally Ill, and I did receive a number of letters back indicating that while information may not be disclosed to me, that my mother's doctor, Social Worker and therapist, should have least in some way acknowledged what I was trying to inform them about my mother and make some kind of investigation, at least, to verify what I had been telling them.

As, stated, I knew my mother suffered from depression, but I also suspect she may have also have been bipolar as well, as once again, when I started reading up on the "symptoms" she had many of the same tendencies: the extremes in the highs and lows of mood swings, and extravagant spending habits. She may also been starting early stages of dementia, and then of course, was her bulimic behavior which I saw on a daily basis.

Well, as it turned out, there was at least an explanation for her bulimic behavior. After my mother was hospitalized on June 8, 2005, and after a battery of tests, it was discovered that my mother had a cancerous tumor in her esophagus. How long she may have had it, is anyone's guess. However, I can't help feeling, that if someone had listened to me when I was first telling of her bulimic episodes, that if some kind of investigation into my claims had been conducted, it could have been determined whether her bulimia was from a psychological standpoint or physiological. In my mother's case it was a medical problem: esophageal cancer. She no doubt began feeling the tumor in her esophagus, it irritated her to eat, and thus her purging of any food she ate.

It wasn't until, what would be my mother's last few months of life, that finally she consented to sign a written authorization allowing me to participate in her psychological, clinical care. You better believe that I went with her, to what would be her last therapy session, for as previously mentioned, he only saw her once every few months, rather than on a weekly basis. And still I had my frustrations. I was conveying anything and everything about my mother's emotional issues, including and especially her depression problems she had had all these years. He then proceeded to say to me, the most ironically stupid thing imaginable to me. "Oh, your mother doesn't look very depressed to me." Sitting right next to me was my mother, with this big, radiant smile on her face. I'm thinking to myself, he's basing his psycho-analytical evaluation of my mother that she isn't depressed, all because she's smiling? Is that why all these years, she was never properly diagnosed with any severe emotional problems all due to the fact, that she was capable of being "normal"? As I said, to the outside world she was the supreme actress and could come across so differently from the true persona I knew her to be.

The therapist did then proceed to give her a very mild anti-depressant, but by then it was too little, too late. In my opinion, she should have been number one, correctly diagnosed of her emotional problems from day one of her very first therapy session and perhaps given medications, years and years ago. And, she might have been properly diagnosed, if she had done one small thing: consented to sign that written agreement which would have allowed me to have not only her information disclosed to me, but for me to participate in her clinical care needs, both medically and psychologically.

I'll never know for sure the full extent of my mother's emotional and psychological problems. Just when I was finally able to have my voice heard about her problems, my mother passed away, not due to her cancer, but complications of pneumonia.

I can't help wondering therefore, if I'm the only one to have gone through the aggravations and frustrations I went through due to the Hipaa Privacy Laws. Yes, I can understand the principles behind them, for in today's society, when everyone is rather "sue" happy, everyone in the health care profession is trying to prevent lawsuits if anything is amiss in protecting a patient's rights. Yet, I can't help thinking that, all in all, a serious reconsideration should be made toward these Laws, especially when in connection with family members. As I view it, the Hipaa Privacy Laws did not protect my mother's rights, but because of the strict policies of what is allowable as far as "disclosed" information, only impeded her getting the proper help she desperately needed.

Websites about the Hipaa Privacy Laws:

http://aspe.hhs.gov/admnsimp/pl104191.htm

http://www.hhs.gov/ocr/privacy/hipaa/understanding/summary/privacysummary.pdf(1)

D18_Privacy_and_Security_Final_Rule.pdf (1)

http://www.hhs.gov/

http://www.hhs.gov/policies/index.html

http://www.hhs.gov/hipaafaq/about/index.html

http://www.hhs.gov/ocr/hipaa/finalreg.html

The edited version of my article as it appeared at the Medhunters website

Medhunters Article