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Jealousy When People Have Normal Lives!

This is actually a very difficult topic because it is hard to admit that I feel something that I should not feel.  It seems wrong to have the emotions I have right now, but it also seems wrong to feel ashamed about what I feel.  This is where I get into the difficulty of dealing with and accepting certain emotions that occur in the caregiving world.  The emotions that we may pretend do not exist because it seems wrong or shameful to accept them as legitimate.

My mother and father-in-law called today to talk with my husband.  They had not spoken in a few weeks at least, and they caught up on their lives.  When I came home, I listened to my husband talk about the great things his parents were doing, how much fun they were having.  He talked about the way they were spending their free time as retired individuals, and I am genuinely happy for them because I love them, but at the same time, I felt extremely jealous.  My husband can talk with his parents about their great lives, but when I talk with my parents, I listen to the stress and fears they possess as caregivers.  I try to be supportive, but I worry about them and their own health which is deteriorating as they wear themselves down with their roles as caregivers.

How could I possibly feel so much anger and jealousy?  This can’t be healthy, but it is a reality.  I feel like my parents had more than a decade of their life stolen from them.  They have not had family support except for my husband and I , and with two kids with special needs, jobs, and school, we can only relieve them once in while.  I do not blame my in-laws or my husband.  They are lucky to find this enjoyment in their lives, but I am angry at the lack of family support my parents have.  I am angry that they do not get free time.  I am upset with the people who have abandoned them without a thought.  I fear for their health more than anything.  This is just another example to me of the far-reaching effects caregiving can have on families and the complexity of the emotions involved.  I am thankful to have parents who give so much of themselves to be the incredible caregivers they are, but I cannot let go of the worry, and the sadness I feel for them as they work without reprieve.  I admire them, and I wish I could help them all at the same time.  I feel guilty for feeling this way, but it is my truth right now, and I cannot deny my emotions.

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Lack of Control in Caregiving!

One of the most difficult issues a caregiver can deal with is the lack of control they have once caregiving begins.  For someone who likes order, keeps a clean home, follows a strict schedule, or has to have control over their life, caregiving can be a shock.  The fact is that caregiving is chaotic.  Plans can be made, schedules adhered to, and the best intentions can be there, but illness does not comply.  Despite the work that goes into keeping order, there is bound to be disorder.

The best thing a caregiver can do is to relax a little.  Realizing that life gains a new meaning when it involves caregiving is a powerful first step.  Some days will be a blur without a moment to catch the breath so desperately needed.  Other days, the caregiver may find a peace in the unplanned moments that bring them closer to their loved one.  There will be difficulties, and feelings of loss can take over when the caregiver realizes they have yielded their control, privacy, and social life.

These may not be an issues for everyone, but in many of the caregiving cases and stories I have read, it is common.  It takes time to adjust to the new life that caregiving creates, and caregivers need to loosen the strings a little and give themselves time to adjust.  The important thing to remember is that as a caregiver, you are taking on a serious responsibility, but also making a difference in the life of another.  You are sacrificing, and gaining something in return.  You are going to fall apart, but you are also going to pick yourself back up.  Caregiving is a roller coaster, and you may not have control over the ride, but you do control how you handle it, respond to it, and any choices you make to change it.

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It is Not About Pleasing the Patient!

Caregiving.  Giving is a part of the word, and it can be easily assumed that a caregiver must also please the person they care for.  Isn’t that part of the job?  As a caregiver, you want to make the person or people you care for happy and make them feel loved.  In many ways, caregivers worry less about themselves, and focus their energy on their patient.  They dedicate themselves to their well-being, and isn’t pleasing them a part of that?  Well, not always.

To be an effective caregiver, you also have to understand there are boundaries and pleasing the patient isn’t always right.  Sometimes, they want something they shouldn’t have and it could affect their health.  This is where it can get tricky.  Someone with cancer may want a cigarette or a diabetic patient may want candy.  You can appease them and risk their health, or assert control and protect them.  However, what if they are terminal?  Do you relinquish control a little knowing they want some things before they die?  This is a decision you have to make, and you can discuss with the patient and the doctors.

What happens when the requests mean you lose more time needed for yourself?  What if it interferes with your appointments, and your needs?  Again, this is something you must weigh.  You have to understand that if the request is not a necessity or a priority, you have to be okay with yourself saying no.  You have to take care of other priorities, including yourself, and this may mean asserting your needs.

Caregiving is not easy, and there is give and take that can be even more difficult than the average relationship.  It is hard to say no to someone who is in your care, especially when they are extremely ill or terminal, but you also have to consider other factors to make the right decision.  Realize that you matter as well, and caregiving does not always mean you must please the patient.

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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.

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Caregiving and the Inevitability of Death!

While there is a wide range of caregiving, this post is geared to those who care for the elderly and terminally ill patients.  This is often an elephant in the caregiving room because so many people are afraid to talk about death.  However, when it comes to caring for someone is walking the road to the end of their days, and you are walking gently beside them, you are surrounded by the presence of death.  Some caregivers can accept this, knowing it will be the end result, and they will do what they can to make their patient as comfortable as possible.  Yet, there are caregivers who struggle and try to pretend it is not there.  They do not want to see it, they try not to believe it, and they cling to a hope that they can keep it away.  Even then, there are those who suffer shock when the patient dies and they are left with a gaping void in their lives.

Caregiving is never an easy job, but when the caregiver must deal with impending death, they not only have their own internal struggles, they must be able to help the person who is dying.  Sometimes, they must push their feelings aside to be there as a support for their loved one.  This can make the inevitable death more difficult, and lead to problems with acceptance later on.

The important thing for caregivers to realize is that there is no way to avoid it, and even if they must shut their emotions off around their loved one, there are ways to handle death before it happens. My first recommendation for those who are really having a hard time is to seek therapy, but there are also things caregivers can do to help them cope with the stress.

  • The first is a journal.  Anything can and should be written in here to help release the pent up emotions that can’t be spoken.  It is a sacred space to record their caregiving story.
  • Next is a plan.  Caregivers need to have a plan to help them when a death occurs and after.  This should help keep the caregiver organized as there will be much to do.  They also need to consider what to do with themselves afterwards.  Caregiving has become a job, and when it is gone, there will be an emptiness that needs to be replaced.  This plan should have specific goals to provide healing activity and to keep them social.
  • Finally, the caregiver should build a support system.  Loss is never easy, but this type of loss can produce so many mixed emotions and have an aftermath that is unexpected.  Caregivers need to have people who can be there to surround them with love, support, meals, generosity, and friendship.

There are many other steps that can be taken, but the most important thing is for the caregiver to feel prepared.  In a caregiving situation where the end is going to be death, the reactions are unpredictable, and the emotions can be overwhelming.  Do not block it out because leaving something this important to be discussed at a later date could lead to an unprepared caregiver.  Address concerns right away, build support, get information, and make a plan.  This will help when the time comes and the loss weighs down the logical thinking.  For those around a caregiver like this, be prepared to help them face death when it arrives. Most importantly, if you or someone you know is having a difficult time, please seek an expert to help you or them.  Everyone is different, and for many, a journal is not going to be enough.  Do not think you have to be tough and handle it alone because there are people who can help.

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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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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!