Caregiving and the Small Stuff!

We all stress, and when you are a caregiver, it can be easy to lose your cool over some of the small stressors, but this can create even more stress.  In fact, caregiving is one of the most stressful jobs someone can have in their life.  When you open your home to aging parents, a sick sibling, or when you are a parent who must dedicate so much time to caregiving and not parenting, you can easily become overwhelmed.  However, this added stress can tax your relationships, and it can begin to affect your ability to function in a healthy manner.

The reason this tends to be an enhanced issue in caregiving is because caregiving brings a higher level of chaos into life.  Caregiving is full of unpredictable moments and often this loss of control means the caregiver seeks control in other aspects of their life.  If the person they care for spills their drink, or loses control of their bowels, this takes away the order that the caregiver has created and can lead to angry responses, arguments, stress, sadness, and so many other emotions.

It comes down to the caregiver needing to recognize that while it is great to be organized and to create order where chaos is, they cannot remove the unpredictability of life.  Surprises, many of them not good, will happen, and they will be frustrating.  However, the caregiver has the power to choose how they will react.  If the situation is stressful, before blowing up or reacting, take a moment to breathe and process.  Walk outside, make a note of it a journal, and then face it.  By removing this additional stress quickly, you can fix it, and redirect your thoughts to something more pressing.  It comes down to choosing what is important to stress about, and what will be a waste of your time and energy.  This will save you and your loved ones in the long run by creating a more peaceful environment.


The Battle Wounds Caregivers Carry!

There is something profoundly impactful, deeply painful, and difficult to discuss that caregivers hold inside.  It does not matter what kind of caregiver someone is, they will have battle wounds that are entrenched in their memories.  There are things that are seen, felt, and experienced in caregiving that can leave a lasting impression on caregivers’ lives.

My caregiving experiences have stemmed from from both of my children, and I have traumatic memories from each.  With my son, it was the moment the doctor took my hand in his and said my baby was dying, and may not make it through the night.  He called for the chaplain, and I felt like the breath had been taken from me.  I was only 20 years old, and still naive.  I had never foreseen this as a possibility because I had only envisioned a healthy, happy baby in my arms.  I felt completely alone as my only partner was my abusive ex-husband, and there was very little solace, if any, found in his arms.

I called my parents, and broke down on the phone.  It all happened so fast, but the image of my baby with his bloated blue belly and yellow-green skin is still as clear as yesterday.  His system failed and the liver could not filter toxins out of his system.  He was severely jaundiced and his bilirubin toxicity was at brain damage levels for days.  This was 15 years ago, and now, my son is here with me, a healthy teenage boy.  He has suffered some frontal lobe damage which has led to many complications, but he is here.  The memories will plague me forever and it is something that even therapy cannot seem to get rid of because there is so much trauma attached.  This is just one of my many battle wounds.

From my daughter, I have many because she has been through three open-heart surgeries.  However, the memory I will discuss right now is not from one of those surgeries, but from a heart catheterization.  These procedures were different, and we were able to go with her to the catheterization and stay with her until she fell asleep from the anesthesia.  When she was 2, she had one of these prior to surgery, and we walked with her.  She was crying, and despite the medication they gave her to relax, she was far from it.  I knew she would fight, but as the anesthesiologist brought the mask towards her, she let out blood-curdling screams and fought so hard we had to help hold her down.  I remember stroking her hair, and telling her she would be okay and we would see her soon.  But, she fought until the anesthesia won.  Then, she was asleep, and we left with sounds of her screams still echoing in our ears.

I couldn’t help but wonder if she would remember it, and be angry with me for allowing them to make her fall asleep.  She struggled with sleep until she was 5, always having to come to bed with me, and I think she related sleep to surgery subconsciously.  She is doing well at 9 years old, but she still has a special heart and we do not know what her future will bring.  I know these battle wounds do not compare to the ones carried by my children.  They have both had to fight so hard, and so early in their lives.  However, they still haunt me.  I can still see these memories so strongly, and the pain I feel when I think of them is as gut-wrenching as they were the day they happened.

Caregivers do not always discuss the burdens of pain and the memories of heartache they carry, but they are there, and each caregiver has them eventually.  They all watch loved ones suffer, and they are subjected to painful moments that may haunt them for their lifetime.  This is another reason it is important for caregivers to have an outlet.  Writing in a journal, speaking to someone, spirituality, exercise, or some way to work through the pent up emotions that come with this important job are crucial to retain mental health.  Do any of you have a memory that you consider a battle wound of caregiving?


The Caregiving Connection, a Blessing in Disguise!

There are so many aspects of caregiving to discuss, and most of what is considered the elephant in the caregiving room is negative.  However, there are the good aspects of caregiving that are often overshadowed by the negatives, and never mentioned or forgotten.  Everyone’s experience as a caregiver is different, but this post is going to cover the beauty in caring for others.

My parents are often mentioned because I see the caregiving they do, and I speak with them about their lives, their sacrifices, and the blessings they have.  Despite the tremendous amount of work they do, they remain positive about their lives and the future.  There are moments where they may struggle and question the direction their lives have taken.  There are days where they just wish for a break because they are exhausted.  But, they have also expressed a profound feeling of gratitude for their lives.  They feel better knowing their loved ones are receiving proper care.  They know that as long as they are caring for them, they will be loved and provided for.  They want to make sure there is a positive, nurturing, family connection because they do not look upon them as a burden, but as humans.  This is where the beauty and blessings of caregiving lives, in the hearts of the carers who give because they truly care.

Another story of caregiving that has been a blessing, is the care my husband and I shared after each of our daughter’s open-heart surgeries.  After her first surgery, she had her vocal cords nicked and we couldn’t hear her cry.  My husband had to work full-time, and when he came home, we slept in shifts so one of us would always be awake with her.  We kept logs of medication dosages, and feedings.  She had to be on oxygen, but we could not allow her oxygen saturation to go above 65-70% because it could cause severe problems.  We were exhausted, but we also had so much time to spend with her, getting to know her.  My husband took a strong, active role in her care, and I saw their bond grow.  It was the countless hours of care that helped us to develop an even stronger connection. I am so grateful for those moments.

Caregiving is often thankless, but we can find meaning and gratitude in the connections that are made.  The truth is that caregiving is an act of human kindness and love.  It is a sacrifice, but it is rewarded in smiles, in the time spent with a loved one, and in the human connection that is often forgotten in our fast-paced world.  Caregiving speeds us up with lots of work to do, but it also slows us down when we realize the mortality that faces us all.  It is a blessing in disguise.


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.


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!


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!