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What No One Tells You About Caregiving!

No one tells you about the person you will care for in a detailed way.  There is no handbook that is specific to the person.  For those people who are used to directions, handbooks, and Google to find out how to do something, you will not be able to get the answers you need.

No one tells the parent of a mentally ill child how to listen to them and understand.  No one explains how the illness will differ from child to child and how the doctors will not always be there for you.  No one explains the time that is spent on appointments, medications, hand wringing, and tears.  No one can begin to explain the stress that will be felt as the child shatters every possible shred of patience left in your heart.  No one can detail the profound love you will feel for the child who is hurting, as you hurt along with them.

No one tells the middle aged children who have chosen to care for their aging parents how their life will change.  There is no way to prepare you for the loss of privacy that will heighten frustration levels.  No one shares the devastation that can be found in relationships between family members as the responsibilities become uneven.  No one can tell you how tragic it is to see your loved one shrink before your eyes, forget who you are, or become a shell of who they once were.

No one can prepare a parent for the image of their child after heart surgery.  The chest tubes and the screams are never fully explained beforehand, and how it takes nerves of steel to not break down and cry.  No one expresses the fear that grips your heart when your child falls or becomes sick because they may have a complication with their heart.  No one tells the parent how they will see so much pain, they will wish they could rip their own heart out and give it to their child.

No one tells the caregiver of a loved one with cancer about the hours of holding their hand to give them courage despite the fear inside.  No tells you about the wishes that will be made in secret as the vomiting begins and the hair is lost.  No one tells you how deeply these memories become rooted in your cells, always a part of you.  No one has a handbook to express how your loved one will handle each step, and how you can best support them.

Caregivers are fighters because they tread into the unknown.  They are not told what will be because no one can know for sure.  Each journey is different, and each one is full of life, tragedy, hope, loss, love, fear, and so much more.  No one can tell you what they don’t know, but they can prepare you for some of it.  Caregivers need to unite because while they care for others, they need to have someone to speak with when it gets to be too much.  They need someone who can empathize with them, listen to them, and never judge their reactions.  There is so much left unsaid, it is time for the dialog to begin.

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Why are Sufferers of Mental Illness Still Marginalized in Society?

I have grown up around mental illness as a reality in my life.  My mother is mentally ill, and as a child/teen, I had to grow up fast and learn to accept the responsibilities of a child with a mentally ill mom.  Granted, my perceptions were still young, and I thought faking being sick so I could stay home with my mom would keep her from attempting suicide.  This is not rational because it also meant I believed if she did attempt suicide and I was not home with her, it would be my fault.  This is how I, as a child viewed the struggle, until I fell apart myself.  Then I realized that no one could necessarily have an affect on a truly suicidal or heavily depressed individual.  The care these individuals require goes beyond what can be provided at home.

I went through my own bouts of depression, and now, my son is mentally ill.  He has many illnesses, and it is very difficult to care for him sometimes.  What surprises me is the way in which society still marginalizes mental illness sufferers as though this minority group’s needs are not important.  People with mental illness are still treated differently and others make wild assumptions about them.  Last I checked, this group of individuals is actually pretty large.  According to the National Institute of Mental Health, 18.6% of U.S. adults have some form of mental illness.  This is nearly 1/5 of U.S. Adults.  How can individuals continue to judge the mentally ill when they take various faces and are all around you.  These people are homeless, wealthy, middle class, poor, black, white, Asian, Hispanic, young, old, and any other descriptive word you can throw in there.  They are teachers, doctors, police officers, cashiers, taxi drivers, friends, co-workers, family, and acquaintances.

On many occasions when I have had to relay my sons story for the millionth time to a new doctor or facility, I have had to deal with the judgmental insinuations that our family must be messed up.  Our family is broken at times, but it is because we struggle to handle the mental illness while living our lives.  The mental illness came first.  Even if we did have family problems, why should others judge us?  What should be more common is empathy.  Our family hurts, we struggle, we fear the future for our son, and we care for one another.  We are a family who needs help because mental illness has intruded on our lives.  We deserve to have treatment without judgement.

The college student who is cutting herself to erase her pain, the high school girl who starves herself to have control, the men and women who struggle to survive from growing up in abusive homes, the soldiers who come home with PTSD, the people who develop schizophrenia, the people with chemical imbalances, the woman on the bridge jumping to forget the rape she endured.  These are all people who are suffering, and they should not be treated as less than human or with a lack of dignity.  Why is mental illness scrutinized so gravely, and why are others so quick to judge?  Why is it so difficult to find help?  Why is insurance for mental illness so limited?  Why can’t we, as a collective group of people, demand change?  Why, as a leading industrialized country, can we not care for the people who need help with the compassion they deserve?

Obviously, things need to change.  I find that caring for a mentally ill child is a caregiving role that is exhaustive.  It is a 24/7 job that requires a lot of work, patience, appointments, medications, and vigilance.  I am tired of the prejudice, the assumptions, and the lack of resources.  I also know many who need help go without it because of shame, lack of understanding, lack of insurance, and fear.  We need to change the perception of mental illness now, and become advocates for the mentally ill.  We should never allow people to suffer in silence.  Mental illness is real and it is prevalent.  It is time to wake up America!

Resources:

http://www.nimh.nih.gov/health/statistics/prevalence/any-mental-illness-ami-among-adults.shtml

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What is Often Left Unsaid!

The art of caregiving is truly complex.  The web it creates can be beautiful, intricate, and shine in the light of gratitude and love.  It can also be dangerous when organization is lost, emotions are high, and chaos ensues.  Yes, caregiving is truly an art.  Those who have been in the process for a long time have created rituals that keep things running smoothly.  The medications may be organized and placed methodically in weekly pillboxes, color-coded, and always refilled on a specific day.  Appointment books or cell-phone planners may be filled with appointments, information about each surgery, symptom, and complaint tucked away somewhere to be readily available.  The insurance letters filed by all of the strange and convoluted forms from privacy policy additions to policy changes that make no sense.

As people become accustomed to the role of caregiving and as they have mastered each aspect of it, down to the science of what makes the patient happy, what keeps them cared for while feeling loved, it becomes difficult to let go.  These caregivers have the web that is neat, beautifully and lovingly spun to sparkle in the moonlight and catch each bead of dew in the morning sunlight.  So while respite is needed because this job is also incredibly exhausting, it is almost too difficult to step away.  Letting someone else take the reins, even for a few hours removes the meaningful dance of caregiving from their day, and the life of independence that was once enjoyed seems alien.  Even if family could come in to provide a week vacation, their mind may linger in the home where their system is being butchered by amateurs.

This is one aspect of caregiving that is very difficult for caregivers to realize and accept.  They are no longer free at this point.  They have become so entwined in living their lives to provide for others that they do not know how to let go enough to live for themselves.  This begs the question of what becomes of the caregiver when they no longer have someone to care for?  It is inevitable that caregivers will eventually resume their lives, but can they find fulfillment again?  How long before they can live for themselves without the gaping hole that is left by the loss of caregiving?  It is like the empty nest syndrome but on a different level.  This is a problem that will need to be addressed as more people become caregivers for extended periods and then must cope with the aftermath.

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Journey Into the Life of a Caregiver!

Caregivers are everywhere.  Parents are essentially caregivers, nurses and doctors are caregivers, teachers and day care workers are caregivers.  However, the caregivers I will be discussing are those who dedicate their lives to the care of others.  Nurses, doctors, teachers, and day care workers get to go home, but caregivers who provide care in their homes to a loved one work non-stop.  There are many of these caregivers, and there are those who stand on the outside looking in once in a while.

If you are not a caregiver like this and you have never been a caregiver like this, it is impossible for you to understand the demands placed on the caregiver.  Perhaps you have a sibling who takes care of your elderly parents and you live in another state.  You may see them on small vacations, but you do not know the true weight that is pressed on a caregiver after weeks, months, and years of caregiving.  You do not know the way it feels to no longer have your home to yourself and to lose your privacy.  You have no concept of what it is like to no longer have freedom because each moment of your life is dictated by the person you care for and their needs.

This is why it is crucial to understand it.  You need to walk in their shoes.  Every caregiving situation is different and they can change and become more difficult as the person ages or becomes more sick.  If you are not a caretaker, but you know one or you are a family member of one who should be more involved, become involved.  Stop taking advantage of the family member who has dedicated their lives, and take some responsibility too.  Incorporate ways to help, provide relief, and do more than move on with your life knowing your loved one is lacking the support they need.

The caregiver needs your support and the person being cared for does too.  If they are abandoned by everyone else, they must feel as though they are a burden and the person caring for them is the only one who cared enough.  You need to recognize that each time you call for 10 minutes to pretend you actually care or to remove your guilt is seen for what it is.  Not everyone is in a situation where they can caregive, but my parents were well off for a while and the excuse everyone else in the family used for my parents needing to take on the role was because they were financially able to.  Now my parents are in a situation where they make less than many of the siblings, but when they tried to get help, war ensued and nursing homes were the first thing everyone else brought up.  This is why they gave up on asking for help, because they knew what the outcome would be and they cared too much to let the human beings they care for to be seen as a burden.  They have the hearts that recognize the need for compassion and humanity, but unfortunately, not everyone else does.

Journey into the life of a caregiver to support them, and consider the humanity in caring, not the work or the burdens.  Caregiving is difficult and it should be shared because respite is needed.  To those caregivers who place your loves ones at the top of your priorities and provide loving care each day, thank you for being a part of the small percent who still embrace others with love and humanity.  Thank you for being the beautiful person you are!

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Mental Illness Maelstrom

For many people, caregiving means caring for those with mental illness, or children and/or teens who fall under the autism umbrella.  In fact, this is one of the areas in which I fall.  I grew up with a mentally ill mom, so I was not a stranger to the challenges of a home life with the mentally ill.  However, parenting a mentally ill child who also falls under the autism umbrella is one of the most difficult jobs I have faced in my life.  Now, I have been challenged, but as I sit here in my home, which has become a maelstrom of emotions from my son’s inability to handle social situations properly, or to control his anger, I find this challenge to be overwhelming.

The elephant in the room right now is that I do not like my son.  I love him with the entirety of my being.  In fact, I would sacrifice anything if it would help him.  Unfortunately, despite all of the therapy, the medicine, the struggles, the fights, the love, the counseling, etc.. I have concluded I do not like my son.  I feel like his turbulence is toxic to the entire family as we all become angry, sad, and unsure of how to act.  I feel like I am walking on eggshells sometimes.  I feel like my daughter will be scarred forever because of the tides of chaos that rise and nearly drown us.

This is a problem that many families go through and it can be devastating.  It leaves us uncertain, and the divide in the home can cause serious stress, and I am feeling it now.  I know this happens to many people, but as I am suffocating in the middle of it, I feel utterly alone.  How could anyone understand the way I feel?  How could anyone know how this feeling of failure as a parent cloaks me, and it makes me feel inadequate?  Then I realize that this moment will pass and I will have a bright moment or two before it falls apart again.  It is like a repeat tsunami, rolling in, crushing everyone, then receding before it rolls back in again.

This elephant in my room is not the only one.  The bigger problem is the whole field of mental illness.  No one wants to discuss it.  Many people cannot get help, and even when help is provided by insurance, it is difficult to find a decent therapist.  We have struggled with this for a long time, always seeking someone who could truly understand or connect to our son, yet his mix of conditions makes him that much harder to treat.  The elephant in the room of mental illness has grown so big with the silence, shame, and fear people have about talking about it, that the room is about to burst.

Why are people so afraid to discuss it?  Because they will carry around a stigma and people will judge them, that is why.  However, unless more people start talking about this problem in its many forms, there cannot be change.  The world will never realize the immensity of the problem, the number of people affected, or the needs for change if those affected are afraid to raise their voice.  This is why we need to open our eyes and see what is really going on, and we need to listen without judgement.  There are too many people suffering in silence, and they need people to be open to discussion. I would love to hear others’ stories.  Raise your voice!

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How Should Caregivers Feel?

This is a complex question that should not even have to be asked.  Yet, caregivers are often placed in a situation where they feel they must come across a certain way around others.  They must be strong and able to handle each challenge without breaking down.  They have to remove any feeling of resentment because that would be wrong to feel and others may judge them.  In fact, they should feel blessed to be caregivers because it is an honor to help a loved one, a friend, a patient, a child, or whomever they care for each day.  So, how should a caregiver feel?

A caregiver should feel however they feel.

It is wrong to limit the emotions a caregiver is allowed to feel because caregiving is one of the most difficult tasks a person can take on.  The dynamics can cause a plethora of emotions depending on the relationship between the caregiver and the cared for.  A caregiver may resent cleaning up vomit or diarrhea each day, and not consider that aspect of caring a blessing.  This is perfectly fine because emotions cannot be swept aside or locked away.  A caregiver could feel their life is falling apart around them as they watch a loved one gradually lose touch with the world around them until they become a mere reflection of who they were.  This is natural.  Caregiving is difficult, painful, heartbreaking, and traumatic at times.  Caregivers will feel stressed, burdened, and overwhelmed.

The good news is that in many ways, caregivers also get other emotions that will make up for the rest.  Sometimes, they get to connect with a loved one on a deeper level.  Perhaps, they find a peace in knowing they can provide care that is better than care from a stranger.  A caregiver may find strength in the role of carer because it gives them a purpose more meaningful than what they have had in other areas of their life.

The most important thing people can do is to recognize that if you are on the outside of caregiving, but looking in, you need to respect the feelings of the caregiver.  Judgement should never be passed on those who devote their life to the caring of others.  If anything, listen to them, validate them, and support them.  Sometimes a caregiver just needs to know they are recognized, and sometimes they just need to be left alone.  Respect their wishes, and provide relief every now and then if you can.

For those caregivers, do not hide your feelings, and do not feel like you are wrong to feel anger, resentment, and guilt.  Your emotions are yours, and you should own them, feel them, validate them, and when you are ready, move past them.  This is part of caring for yourself, which will enable you to continue to care for others.

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The Elephant in the Caregiving Room Introduction!

I have another blog on WordPress, but I realized that I was writing about caregiving and leadership when those two topics need to be separated for me to truly address them the way I want to.  One of my caregiving posts was called The Elephant in the Caregiving Room.  It was the breakthrough post that allowed me to voice my opinion, based on experience, about all of the things people do not want to discuss as caregivers.  The phrase became quite popular with my friends and family as well as a few people who responded to my blog, and I realized this is what I need to write about because it is important.  Caregivers hold back so much, and they should have a way to express themselves.  I now plan to work on a book for this subject, but I will be tackling aspects of this topic on this blog as well.  Here is the post that I wrote that started it all:

This post is going to be incredibly personal as I discuss something about caregiving that is often left out of the equation.  The fact is, people tend to portray the heroism in caregiving or the toll it takes on caregivers.  Yet, there is a conflict that arises and is never discussed, at least not that I have seen.  We all know caregivers lose a piece of their life, they give a lot of time to care for loved ones, and they lose privacy, but there is something that is lost that goes much deeper than an afternoon out.

My parents have cared for my grandparents for 13 years.  After my grandma passed last year, they continued to care for my grandpa.  Recently, they took my Aunt Mona, who is dying from cancer, in.  They have sacrificed all privacy.  My mom has been a caregiver full-time instead of working, and now that my father is unemployed, he has been a caregiver full-time as well.  They spend their life organizing medications, doctor appointments, wheelchairs, nurse aids, oxygen tanks, bathing, feeding proper foods, and any other aspect that fills the corners of each day.  This is something people tend to associate with caregivers, but unless you are the caregiver, or you truly see what these people do, you cannot possibly understand the effects that go beyond this.

I have lost a huge part of my parents, and they have lost themselves, and their relationship.  I used to be able to call my mom and go to lunch with her when I had a day off and my son was in school.  We could go shopping, have mother daughter time.  I could hang out with them and watch movies.  We could meet for dinners.  They used to be able to go to dinner or a movie as a couple when they wanted.  They could schedule a vacation.  Instead, they have learned to love as partners in caregiving, not partners in the typical, marital sense of the word.  They do not have the same relationship because the caregiving has become their world.  As I approach graduation, I had to worry about the fact that I only have 6 tickets for family, and they do not have anyone to watch grandpa and Aunt Mona.  They do not feel like the extended family will take the vacation time to help.  There are a few siblings that could not because they are not able to financially, but even those who could, would consider this a burden and would most likely not make this work.

The problem is, I feel guilty because I do not want my grandpa or Aunt Mona there.  I know that if they are there, my parents will be distracted.  My grandpa has Alzheimer’s and when he is away from home, he gets anxious.  If he gets anxious, my dad will be worried about getting him home, and my mom will feel like she is rushed to leave.  The whole time will be spent worrying about them, and I want it to be a day that I can get the degrees I worked 6 years for with my parents who should be able to enjoy watching their daughter achieve something.  I feel like I should not feel this way because my parents can’t help it, but then I feel like I should be able to feel angry because my parents should have a more supportive family network.  This makes me angry.  Then, I feel conflicted.  If I feel this way, I can’t imagine how conflicted my parents feel.

When I see my cousin post pictures of her taking her parents on a train ride through the mountains and enjoying a small vacation with them, or pictures of happy, stress free dinners, I get angry.  These people get to live their life, and they do not have any realization that my parents do not get this vacation, and I can’t invite them on a small vacation.  We do not get stress free dinners together, and we do not get to have anything remotely like they do.  Their lives are full of freedom while my parents are restricted by this role of caregiving.

Now, I do not want people to think I devalue caregiving.  If anything, this makes me respect caregivers even more.  What I want to do is make people understand the extensive effects of caregiving,  Relationships suffer, freedom is lost, and feelings become turbulent.  Feelings of duty and expectation mix with anger and guilt.  Caregivers, and their close family members who are actually involved, tend to live with guilt when they feel upset or angry over the abandonment of the rest of the family, and the overwhelming nature of caregiving.  Why should someone who gives of themselves daily because they care for another human being feel like they cannot share their feelings?  Why should they feel as though they need to keep plugging along without days of grief?  Why can they not be allowed to express frustration without feeling guilty?  It is because society expects them to be troopers.  We expect them to give of themselves without a reprieve and to be thankful because they are impacting another life.  Yes, caregivers may be thankful for the time they spend with their loved ones and knowing they are getting the right care, but they are also overwhelmed, exhausted, and they deserve to express their emotions without judgement.

These feelings are normal.  It is a lifestyle change that seriously affects every aspect of a caregiver’s life, and they have the right to be overwhelmed, and they should not have to feel shame or guilt when they feel this way.  It is also normal to feel jealousy, anger, and resentment against the rest of the family as they move on with their lives, leaving the caregivers behind in the haze.  This is what people need to discuss because otherwise, more families become divided, and more caregivers will carry unnecessary guilt.  It also needs to bring light to the inequality in families when it comes to caregiving because so many are left without a family network to rely on, and this breeds feelings of extreme anger and resentment.  I can honestly say that I am still working through this as I deal with anger towards the rest of our family.  I see people who get to live their life, and I desperately want more natural time with my parents.  This is the elephant in the caregiving room.  This is what is no one want to talk about, but it is there, causing tension and pain in caregiver homes everywhere.  This issue needs to be faced head on, and dealt with because caregiving is becoming more prevalent in our society, and the baby boomers are aging.  It is time to make a change instead of avoiding the issue, and the first step is to recognize this problem.