Caregivers Intelligent Ways To Survive

February 22, 2012 by survivor

Care and Survive IntelligentlyWorld is a beautiful place, we live in it! World is also a very ugly place. There is a balance one has to strike to care and survive successfully. Here are top 10 ways based on life experiences. Nowadays there are several one-liners you can find with constant words of inspiration and wisdom. This list takes those into account and builds upon them.

10. Do NOT do charity at home in silence, there is NO evidence. Advertise your caring for your own protection.

9. People lie. Do good anyways. Gather evidence of their lying and use it only if they use lies against you.

8. Stereotypes are hard-set. Be a maverick with caution and keep evidence to protect yourself first.

7. Truth is a lonely path. Lead wisely.

6. People cheat and fraud. DON’T let sympathy fool you. Report it to authorities lest they use it against you.

5. Honesty is overrated and superficial; hypocrisy is the norm. Know this gruesome reality.

4. Justice, Morality, Ethics, Legality, Conscience. Understand the difference among them for your own sake.

3. Survival of the fittest. Certain barbaric traits are renamed as ‘civilized’ but the original saying still holds true.

2. Follow your fragile heart with consequences. Your soul will be happier when it passes on to the next world.

1. Love is simple, beautiful and human. Trust someone who trusts you.

2 Comments / Tags: AIS, Androgen Insensitivity Syndrome, awareness, caregiver, child, children, education, ethics, honesty, intersex, love, male caregiver, moral, spouse caregiver, support, support group, survivor, trust, truth, young caregiver / Posted in Change

Caregiver Rights – Its Time For A Change

February 13, 2012 by survivor

It’s a very simple goal : Health Care Providers need to change the messaging to caregivers from

“It’s not your business to be here between me and my patient”

to

“I am sorry, even though your loved one, the patient, has requested for your presence as a caregiver, I respectfully decline and I suggest you contact this xyz counselor”. 

Really, how hard is it? Would it better human lives? Would it provide better care for both the patient and the caregiver? Isn’t this really at the heart of any medical condition. It seems like it should be easy to get this change made in a civilized society. But it is NOT. It is far more difficult to practice than preach. We will probably write annals and volumes of text on this to debate the pros and cons (are there any?) just to have a few words change. And we thought devoting our life to caregiving was tough, huh?

We are very grateful to good medicine and the good health care provider who help save lives of our loved ones. It’s through their education and dedication we are able to enjoy a better living. However, is the medicine ALL-encompassing? Does patient care end at the hospital/medical office door? 

Change does not occur overnight and it starts with a modest beginning. The messaging should be changed because it is the right thing to do for the caregiver and the patient and for their loving relationship. If you agree, please help me.

1) Competition – The health care provider provides care to the patient. The caregiver provides care to the patient. Do the health care providers feel threatened by competition from the caregiver? Is that the underlying reason for not changing the messaging and thinking about the caregiver?

2) Love – The health care provider cares for the patient because they get paid to do so. The caregiver provides care for a loved one and is voluntary. Caregiver shares a special bond with  the patient that the health care provider will never have. Is their jealousy? Is that the underlying reason for not changing the messaging and thinking about the caregiver?

3) Medical Oath – Most health care providers have to take the medical oath and have fiduciary responsibility to the patients. What about the caregivers? By neglecting the caregiver needs of today, are they creating new patients of tomorrow? Is that the underlying reason for not changing the messaging and thinking about the caregiver?

4) Specialization – Thanks to the varied specializations in medicine, it helps save lives of our loved ones. However, the specialists took a medical oath to serve ALL patients. The specialists are far better qualified to make a recommendation to the caregiver for support than the unknowing caregiver. Using statements as “that’s not my area” is a cop-out. How are they helping better human lives? All they have to do is point in the right direction.

5) Authority – Good health care providers deserve all the respect. After all, they save human lives and that too of our loved ones. But they should be stopped from being authoritarian as if they are the only ones who know best. They do not know the circumstances between a caregiver and a patient. It is best to treat the patient with their specialized skills and direct the caregiver to their needs for support. Both are medical issues.

6) Doctor-Patient Privilege – While this should be respected at all times, what do you do when it becomes criminal? Trampling on caregiver rights for the sake of getting a patient better is not good health care in the long-term. Also, is this what a patient wants for their loved one, a caregiver? Are the patients wishes respected by the health care provider?

Change does not occur overnight.

This is a first in a series of several volumes of text to be written to make a simple change in the messaging by health care providers. Please do offer your feedback and come back to check for updates. I sincerely do wish that someone is listening and they can make these minor changes to the messaging. Both the health care provider and the caregiver have a common goal – better life for the patient and the loved one. I do not understand why they cannot agree on this simple messaging change.

1 Comment / Tags: AIS, Androgen Insensitivity Syndrome, awareness, caregiver, caregiver rights, caregivers, change, child, children, counselor, education, health care, intersex, male caregiver, medical fraud, medical malpractice, spouse caregiver, support group, young caregiver / Posted in Change

Top 10 Tips For Caregivers of Androgen Insensitivity Syndrome (AIS)

February 10, 2012 by survivor

Top 10 Caregiver TipsCaregivers of Androgen Insensitivity Syndrome (AIS) are an underserved group. They are a minority within a minority. Often as with other minority issues, resources are hard to find. For Caregivers of AIS, this is a double whammy as they are a minority within a minority. Given the unique situation of AIS, the relationship of the caregiver to the AIS patient is also important to take into consideration. For example, if you are a parent of an AIS patient, your needs may be different Vs. a caregiver as a trusted friend. If you are in a relationship with an AIS patient and if you are frauded, how do you handle the situation? Do you stay and become an unprepared caregiver or do you leave the AIS patient? As with any caregivers’ dilemma, these are some very moral, ethical, spiritual decisions. A salute to ALL caregivers for taking the higher road and answering your higher calling.

Here are top 10 tips from the perspective of an unprepared caregiver of an AIS patient who was frauded into the relationship. Some of it maybe relevant to all caregivers of AIS patients.

1. It is very traumatic for your loved one that they have AIS. It is traumatic for you as a caregiver, especially if unknowing, as well. Let the medical staff know you are a trauma patient and ask for medical help.

2. Get immediate counselling for yourself. There are an army of resources for the AIS patient. What about you the caregiver?

3. Do not worry about privacy rights of the AIS patient, tell a trusted family member for your own support. Even if the AIS patient insists on forbidding you to keep the issue private, tell them its NOT OK and get help as a caregiver.

4. Do you feel like you do not know how to react when you first get the news? Do you feel like your betrayal is less than the trauma of the AIS patient? It is NOT. As a caregiver, you need support too. Collect accurate information. There are plenty of support group sites/resources for AIS patients. If you cannot find a local Caregivers of AIS Support Group, look for a general caregivers group locally. There are several caregiver groups for cancer patients, Alzheimer patients, and other traumatic ailments. As a caregiver you can best relate to them and not the AIS support groups who mostly care about AIS patients or their parents. Hopefully our advocacy will change that and we can look forward to a more inclusive approach.

5. Be sure to educate yourself on domestic violence, ensure your personal safety from your loved one.

6. In case you are an unprepared caregiver in a relationship with an AIS patient and then found these facts, you just found out you have been frauded. Understand that in most parts of the world with decent medical knowledge, AIS is diagnosed at or near puberty. Do NOT let anyone confuse you about that. You need special support for your situation.

7. Get informed about the concealment-based approach used to treat AIS. If you are experiencing this, speak up because it is wrong against you as a caregiver. It is no longer ethical or legal to misrepresent facts on medical records because it taints documentary evidence. If any of the medical professional is engaged in secrecy and lying, go to the Ethics Committee of the Hospital or all the way to the President of the hospital if need be. With increasing activism and support, ethics committee are becoming a norm at medical facilities or the President of the medical facility should be able to address your concerns as a caregiver.

8.  The AIS patients and their special interest groups will lobby hard that the gender is about how the AIS patient feels and we should respect that. Absolutely! In a civilized society, mutual respect is a must. And as an unprepared caregiver, your feelings count equally and you have the right to not be frauded before getting into a long-term relationship. That is the ethos of a civilized culture. Make sure they know your feelings are equal and just as traumatic. Do NOT get bullied.

9. Do not let your feelings be oppressed. Let it out. Find a channel. Look for peer support groups, fun activities, to keep your juices going. Keep engaged in the community. Like any other caregiver, give yourself a pat on the back. You are not alone. You are a caregiver, a survivor, a warrior. Your strength is needed for your loved one to recover.

10. If you choose to stay on as a caregiver, please visit us regularly and share your thoughts and experiences. We have very little information on caregivers of AIS patients and we can use every perspective we can get for this minority within a minority group. Growing together is the way forward.

Historically, minorities are always threatened. But it helps to get organized. It may take time and it may not happen in our lifetime. Minorities are often oppressed or persecuted or bullied before being accorded their equal rights. Looking ahead to the future, let us hope that our equal rights are around the corner and not the distant future. Let us hope that we can get past the unnecessary persecution, oppression of minorities and are afforded our inevitable equal rights as Caregivers of AIS patients.

A salute again to ALL the Caregivers for what you do regardless of the patient’s ailment.

1 Comment / Tags: AIS, Androgen Insensitivity Syndrome, awareness, CAIS, caregiver, child, children, education, intersex, male caregiver, minority, PAIS, spouse caregiver, support, support group, tip, tips, Top 10, young caregiver / Posted in Education

Can Androgen Insensitivity Syndrome (AIS) Patients Be Parent?

January 30, 2012 by survivor

This is a fundamental birth right of every human – to procreate. However, it is not in each individual’s hands. Some people who are biologically capable of having kids choose otherwise for personal reasons. For some other people, its a matter of circumstances. For Androgen Insensitivity Syndrome (AIS) patients, its a matter of reality. They cannot have biological children. Its a very sad but true reality. Does this mean that AIS patients cannot be a parent?

Messaging Change for AIS Patient

It is time to change how we deal with this question. If we were to believe the so called subject matter experts and counselors, AIS patients cannot be parents. They will have us convinced with their authoritarian messaging infrastructure that AIS patients cannot be parents. Typically, AIS is diagnosed either at or around puberty. A very traumatic situation for any person to find out they cannot have children. It is absolutely necessary to counsel, guide and provide support to the AIS patients. The question is what should be the message? Is it time to update the traditional messaging?

It is important to say the truth. It is important to give the AIS patients realistic options and expectations. It is important to make them feel just as normal as everyone else especially if they want to have a normal family in the future. The message is to say you cannot have biological children but there are options available today to become a great parent. For example, adoption is a great option for AIS patients to be a great parent. With advances in technology, ART(Assisted Reproductive Technology) offers options for AIS patients to be great parents. There maybe other options that we unaware of. The point is to be sensitive and offer options and not just identifying a problem.

The current situation offers much needed counseling to AIS patients typically when they are diagnosed at or around puberty.  Depending on the local culture, the AIS patients may have different experiences. After diagnosis, years of counseling follows with a constant messaging they cannot be parents. And no options are offered. This sends a very wrong message.

Support Caregiver and Innocent Kids

It is human decency and civility that the AIS patient discloses this condition before-hand to their partner before getting married. If the AIS patient frauds and has treatment to remove male testes and goes on Hormone Replacement Therapy while in the marriage, the partner has just become an unknowing caregiver. Now he has an added burden of making a family. In addition to other caregiving  issues, the unknowing and unprepared caregiver is left to “undo” years of professional counselling. He has to convince the AIS patient, they can be a parent. Is this either fair to the AIS patient or the unprepared caregiver as they are trying to have a normal family? Is this fair to the innocent kids?

It is time to change.

It is a simple change, change the messaging and give factual options. Let us help the AIS patients who can be parents. Let us help the unprepared caregiver for the help and support they need. Let us help the innocent kids who come into this world of such families.

1 Comment / Tags: adoption, AIS, Androgen Insensitivity Syndrome, ART, awareness, caregiver, child, children, concealment, crisis, education, foster care, HRT, intersex, IVF, kids, lying, male caregiver, parent, parenting, spouse caregiver, support, support group, trauma, young caregiver / Posted in Parenting

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