Young, Male, Spouse Caregiver – A minority within a minority

young-male-spousal-caregiverA recent survey by the Family Caregiver Alliance, there are 65.7 million family caregivers in the USA and found that 34% of all caregivers are Males.

It also found that young caregivers comprise less than 4% of all caregivers, and less than 13% are spousal caregivers.

This survey for the first time gives us a remarkable insight into the previously hidden world of caregivers, and contrary to the well established and pervasive stereotype of the elderly female caregiver, we find within the data the existence of a rarely recognised and seldomly supported minority caregiving group, the young to middle-aged, male, spousal caregiver, a minority within a minority.

Minority Caregiver

The condition is very traumatic for the patient. What kind of support, resources, rights are available to this minority male caregiver category?

Anyone who cares for someone, regardless of their gender, has a compassionate and selfless view of the world. They deserve respect, support and laws to protect them equally regardless of gender. Consider some of the issues that a young, male, spousal caregiver may be faced with.

  • The caregiver is a male – a minority. As per a recent survey, 34% of all caregivers are men.
  • The caregiver is young in their 20s or 30s, far younger than the average age of 49 for a caregiver.
  • Less than 13% of all caregivers are spousal caregivers. They are themselves at high risk of becoming a patient themselves.
  • Young, spousal caregivers are also at imminent risk of losing the emotional support and intimacy of their spouse, depending on the patient’s medical condition.
  • Spouses do not have access to information of their loved one, whose information is hidden due to privacy provision.
  • Because of a lack of information or privacy, resources and support are unavailable for the young, male, spousal caregivers.
  • The young, male, spousal caregiver’s life, career and future plans are at a standstill at a very young age.
  • What if due to a traumatic medical condition there is domestic violence or abuse against the young, male, spousal caregiver? There is very little protection for the male carer in this situation under law.
  • The young, male, spousal caregiver has to fight the entrenched stereotypes and the related bias against them, found in every institution that otherwise is there to help caregivers.
  • Caregiving Isolation – there is very little support and people who understand a young, male, spouse caregiver in his peer group during caregiving. And once caregiving has ended, there is still very little support and people who understand as the caregiving has changed him forever.

There are several other socio-economic, psychological, and other issues that arise out of this one event in their life. The young, male, spousal caregivers range from being caregivers of cancer patients to several other medical conditions. In many cases, the carers relationship with his loved one, the patient, is relatively short and not yet fully developed. As per a recent study by Fred Hutchison Cancer Research Center, women are 6 times more likely to be divorced or separated when diagnosed with a major illness. The carer could have left early in the relationship, however the young, male, spousal caregiver stays in an unpaying caregiver position out of selfless love. A commendable but very rare trait in this world.

Broken Trust Of A Caregiver

Now imagine if the young, male, spouse has also been deceived as to the existing condition of his spouse. Imagine if the spouse had a rare medical condition which was hidden in the sanctity of marriage. Now the young, male, spousal caregiver becomes a miniscule minority within a minority. Androgen Insensitivity Syndrome (AIS) is a condition that affects sexual development before birth and during puberty. People with this condition are genetically male. They may have female sex characteristics or signs of both male and female sexual development. Caregivers of AIS  or intersex patients are a rare but very committed group of people. Given the secrecy and deceit surrounding intersex, the young, male, spousal caregivers of an intersex patient may have been unwitting victims of a relationship based on half-truths or untruths.

Trust is paramount in a marriage and what does one do when trust is broken? Among the intersex community, there is a widespread discussion on foregoing the traditional concealment-based approach (aka deceit and secrecy). Because of this secrecy, the male, spousal caregiver does not get the information about the medical condition because of privacy prohibitions. How is he supposed to cope alone without proper access to information. Moreover, given the stigma associated with the medical condition, the caregiver has to debate between saying the truth or respecting the patient’s privacy. How is he supposed to get support or help from support groups, caregiver resources unless he is allowed to say the truth. In a way, it is like fighting the same social taboos all over again like in HIV/AIDS and the fight is still continuing.

As with other rare medical conditions, to the layman, they have possibly no information about the condition and may have never even heard of AIS or intersex before. While the condition may be traumatic for the patient, what about the caregiver who has little information about the condition, and even less support?

Caregiver of Intersex or AIS Patients

The impoperly-informed caregivers of AIS patients, itself a rare condition, are an even smaller subset of a minority, but are no less deserving of support and compassion themselves.  It is hard to find any similar caregiver category, which combines the pressures of youth and caregiving, with the unfortunate elements of deceit and stigma. Does this however mean that young, male caregiver should not get support? The answer should be No, however the reality is very different. It seems like it is a crime to become a young, male caregiver due to the severe lack of awareness and support. Let us defeat the secrecy and stigma with truth and education.

What is so unique about the unwitting caregivers of AIS patients who are their partners, unlike parents or family?

  • The unwitting caregiver entered a relationship based on deceit, only to later find out about the reality of their AIS partner.
  • The AIS patient has plenty of support and resources, however due to privacy provisions, the caregiver is often left in the dark.
  • The unwitting caregiver’s feelings and abuse are never recognised, let alone addressed.

Let us start by providing the needed support to the young, male caregiver one thing at a time.

The situation is so unique that there are no support groupsno NGOsno medical intervention groupsno lawsno ‘institutional look the other way doers’ to help young, male, spousal caregivers of AIS and protect their rights. While the world is still struggling with equal rights for LGBTI, rights of caregiver of LGBTI are not even on the horizon yet. What about equal human rights?

When one factors in the “stereotypes” where males are considered to be LESS of a caregiver, these specific group of caregivers have an added burden of fighting through the bias and discrimination. There is no one to marshall the resources and work the system to help the caregivers who have undergone this severe trauma in loneliness at a very young age.

Imagine a different medical condition like Alzheimer’s. While there is no known cure, the best cure is to rejoice the moments there are. There is a lot of information and resources and support groups for caregivers of Alzheimer’s. The inclusive approach makes the experience so much better both for the caregivers and the patients. Isn’t truth the best way for all caregiver-patient relationships regardless of the medical condition?

This post originally appeared on Ezine4Males Articles on 11th Apr. 2012.  This is cross-posted from there.

Caregiver of Alzheimer and Androgen Insensitivity Syndrome (AIS) or Intersex

Androgen Insensitivity Syndrome (AIS) is a condition that affects sexual development before birth and during puberty. People with this condition are genetically male. They may have female sex characteristics or signs of both male and female sexual development. Frankly due to the severe lack of resources for caregivers of AIS or intersex patients and given the secrecy and lying around intersex, I tend to find lot of useful resources for caregivers by learning from other caregivers. One of the group of caregivers I have found a lot of useful information from is Alzheimer caregivers. As a debt of gratitude to everyone associated with Alzheimers – patients, caregivers, doctors, nurses, science and so many others, it is a great job you have done in educating others. We may not have answers but raising the awareness provides a ray of hope getting closer to the answer. Change always starts with something new and something small. I pray and hope that the intersex community also takes an inclusive approach between patients, caregivers, family members, doctors, nurses, and the entire ecosystem.

Young, male, spousal caregivers of intersex patients are a minority within a minority. There are so many similarities and dissimilarities between caregivers of Alzheimer and AIS or intersex. Especially, when so much information is available on Alzheimer. Apologies in advance if there is a misunderstanding of Alzheimer’s as the experience is strictly from learning from other Alzheimer resources and caregivers.

Some Similarities for Caregivers of Alzheimer and AIS or Intersex:

Alzheimer
AIS
Both conditions affects the entire family. Alzheimer is a traumatic condition for the patient and for the caregiver. As much as it is a physical medical condition, it is also a mental health and emotional condition like AIS. The patient caregiver is often referred to as a "second patient" of the condition.
Conflicting emotions of love and Caregivers Guilt are often cited by caregivers. Patients with either of the condition require regular care — a responsibility that generally falls to a family member. The caregiver - be it a spouse, sibling, child, friend, or a loved one has a deep bond for the loved one, the patient.
The change in personality, cognitive skills, emotional well-being and violent behavior in rare cases is common between patients. It is a state of emotional comatose. While the changes are explainable medically in either patients of Alzheimer and AIS, the medical condition makes a huge impact on the caregiver. Up until the treatment starts, there is a great emotional connect between the patient and the caregiver. With the advancement of the condition/treatment, the caregiver has possibly lost their emotional partner. Is the caregiver living through the medical condition through the loved one, the patient?
Through sickness and in health.  In the early years of caregivers for Alzheimer's, there were hardly any support groups with a common aim. There was no "release channel" for the caregiver to just let it out with a fellow caregiver. Just to have a shoulder to cry on and get recharged again to care for the loved one. It is through some great advocacy and predecessors that today we have Caregiver Bill of Rights. Intersex caregivers lack support. Both caregivers stay to keep their vow to the loved one through great sacrifices.
Very little information and resources available for caregivers. In the early years of Alzheimer's, the caregivers were provided with little information and there was no "manual for dummies" for caregivers. It was a forced, circumstantial situation and as a caregiver you either accepted the loved one or did not. For young, male, spousal caregivers of AIS and given the sensitivity of the condition; the spouse, a non-blood family member does not enjoy the same access to health care information due to privacy.
Conflict within the family as to who would be the caregiver. If long-distances are involved within the family, the caregiving responsibility falls solely on a single caregiver who is closest with the patient, typically a spouse.
For the caregiver, taking care of the loved one is a full-time event including dealing with their own life. For others including members of the family, it is a "sad" event for a loved one and are very removed from what it takes to be a caregiver on a day-to-day basis.
As a caregiver, their life comes to a stand-still. You are responsible for household chores, paying the bills on time, finances, social calendars, and so on. Caregivers often put their careers on hold or pick careers offering more flexibility to take care of a loved one.
Intimacy. While not a deeply discussed topic, it is important. For the spousal caregiver, the loss of loving touches, loss of emotions from their loved one is devastating and any sexual desires are put on hold while the patient, the loved one recovers. The patient's behavior is due to the medical condition but the spousal caregiver also needs emotional and moral intimacy.

Some Dissimilarities for Caregivers of Alzheimer and AIS or Intersex:

Alzheimer
AIS
One in eight older Americans has Alzheimer's. One in 20000 births has AIS. Consequently, the number of caregivers for Alzheimers is far greater than caregivers of AIS. Scant to no resources, support groups, advocacy for caregivers of AIS are available They are reinventing the wheel that some great predecessors have already fought for.
For spousal caregivers of AIS, chances are high that they were lied to and betrayed given the Intersex protocol of brainwashing, propoganda, and falsifying medical records. In addition to all other issues of a patient caregiver, he also has to deal with betrayal and distrust Vs. sensitivity. It is a tall order at such a young age and at beginning of a relationship.
There is little known information on specific causes of Alzheimer's but there is a widespread awareness which helps funds for research and hope for a cure. The typical age of an Alzheimer patient is much older. In the meantime, plenty of support and training is available for caregivers who are the best defense for fighting against the condition. More than 15 million Americans provide unpaid care for Alzhiemer patients. In contrast, AIS is a well-understood condition medically and typically is diagnosed pre-puberty or at or around puberty. No one can predict if the spouse you marry may get Alzheimer's down the road. But AIS patients can choose to share with the spouse up-front about their genetic condition especially in the sanctity of a marriage. Very little or no support is available for the unpaid young, male, spousal caregivers of AIS.
Alzheimer patients have visible physical symptoms and have mental health issues. AIS patients have few visible symptoms and have mental health issues dealing with the severe trauma and crisis. The "state of mind" is a complex situation to understand and solve. In the social context, it is easier for people to see a visible symptom and offer care but miss out on the "big" mental health issue.
Alzheimer patients, at a much older age, are not necessarily the primary care providers of infants or children. AIS patients could be primary care providers for infants immediately following treatment. There is NO data on this situation, it is unprecedented. Can a person under severe stress and trauma undergoing intersex surgery treatment be a primary care provider for an infant or a child? What does this do to the entire patient-caregiver dynamic? There are plenty of experiences where a caregiver with children is also caring for a dear parent or sibling or loved one with Alzheimer's. But being a caregiver for your spouse with Alzheimer and a primary care provider for your infant at the same time is rare.
Given the typical age of Alzheimer patients, there may be other age related issues. The symptoms are physical and easier to identify. Sadly, these are medical issues closer to end of life and the social context is much different towards a Alzheimer patient. In an AIS patient who has treatment as an adult while in a marriage, a huge remainder of life remains after the treatment stabilizes. The symptoms are more psychosexual issues and hard to pin down unless people around the patient know the truth. The social context is very different towards a young, AIS patient who has been through severe trauma and crisis. What about the caregivers? Did they live the condition through their loved one's trauma and crisis?
For AIS caregivers, if the caregiver is a spouse, the caregiver would be in the category of a young, male, spousal caregiver - a minority within a minority. The length of the relationship between spouses is too small. Is there an equivalent bond of love and deep commitment? The caregiver's peer group is young and hard to find a "fellow empathizer" as opposed to several caregivers of Alzheimer. The support system for young, male, spousal caregivers of AIS is non-existent at best.

 

What Is The True Cost Of Lying for Caregivers?

Lying is a risky business. When lies occur between people, there maybe break-ups and you simply let go. When the same lies occur in a community environment, it is looked as fraud, possibly even a crime and legal action ensues. When the same lies occur in court, its perjury and it is up to the relevant authorities to see if the system is being manipulated and disrespected or not? Secrecy and lying by AIS (Androgen Insensitivity Syndrome) patients and by institutions and authorities on their behalf is wrong and insensitive. Is it same or worse as other scandals like Arnold Schwarzenegger or Tiger Woods or John Edwards, all who had very supportive spouses for years and took care of the kids. Unknowing caregivers at a very young age are victims of this insensitive practice.

From a moral perspective, between humans, what is the true cost of one lie? From a perspective of teaching your own kids, what is the cost of teaching a kid to lie for a lifetime?

Experiencing continuous lying first-hand as an unknowing caregiver at first was reprehensible and then later was numbing. As the old adage goes, when you lie once, do you say 10 more lies to hide one lie? or a 100 lies? or a 1000 lies? I suppose it never ends. After a while, not only it becomes a habit and a part of your fabric in everyday life but it becomes a necessity. From a kids perspective, it becomes confusing about what message they should take? Should they lie or not? Or if they lie, should they lie 10 more times or 100 or 1000? That is a cost we cannot calculate as you are teaching kids to lie for a lifetime.

Whenever you lie, someone else is getting hurt somehow. Or is it more sensitive to lie for someone else even if it hurts you? Something that an unknowing caregiver is forced to do. What is the cost of suffocating someone’s voice? What is the cost of a human voice’s freedom? We all saw the Arab spring recently, millions of people in several countries want their human voices heard. Sadly, some people had to pay with their lives just so that their or someone else’s human voice is heard. They left behind loved ones who still grieve for them. What is the cost of that intuitive human spirit to have their voice heard?

Is making someone lie forcibly on your behalf same as suppression of the voice? Is it oppression? As we move to a more open society, sharing every minute detail about ourselves and with information accessible easily, it would no longer be prudent to lie. What took Erin Brockovich years of diligent hard work to unearth the facts may take less time now. Not because we have gotten smarter but information has become easier to find. In this age, it is no longer “sensitive” for the medical community to lie just because they have been since the last century. It is time for them to change with the changing times. The tools available today are too smart for people to lie to each other, especially at an institutional or systemic level.

The contention is that this medical malpractice is actually spreading a different epidemic with this behavior instead of trying to solve the real problem. They may be arming their patients with a prescription to lie since authorities and so-called subject matter experts like them support them at an institutional level. The right solution is the truth. Truth to the patients, truth to the caregivers, truth to others via education and awareness. Because when they teach their patients to lie its like a parent teaching their kids to lie, it’s a very confusing message. Smoking cigarettes inside buildings was allowed before and it was cool. Smoking is no longer allowed in most buildings in the world. Times change and it is time for a change to stop lying in the medical community. Frankly, the medical community is too biased to even calculate the cost of their lying prescription. They would rather continue this malpractice and spend more time in offering some cock-eyed, scientific, logical explanation to justify their behavior and satiate their soul. We pray we are wrong. And saying it’s for “sensitivity” reasons is wrong. Because when you lie, you are hurting someone else and that is insensitive. Unless, the discussion is that one human’s life is lesser than other’s?

We may never know the true cost of a lie or a thousand lies but one thing will always stand the test of time, it’s the truth.

Caregiver Rights – Its Time For A Change

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.