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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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Even Communication in Medicine is Sterile Now!

Growing up, I would watch Dr. Quinn Medicine Woman, and I read Little House on the Prairie books.  Life moved at a slower pace in both of these settings, and this gave me a warped judgement of how medicine really was.  However, even the more modern medicine I received when I had to go to the pediatrician was decent.  The doctor seemed to listen and care. However, something happened over the years, and the changes are affecting everyone.  As insurance issues arose, greed and business maneuvering became a major component in healthcare. Laws restricted healthcare, litigation was overabundant, and the humanity has been replaced by a sterile environment which prioritizes other concerns as higher order concerns over the patient.

There are still great doctors out there who operate within the confines of their job to provide incredible care.  It is becoming more rare though as medical students are rushed through clinicals, and doctors have to ensure they can meet the needs of the masses.  Everything begins in the way students are taught the science of the body instead of the art of the body when both are equally important.  To understand a patient’s psychological state through communication, a great deal about their physical manifestations can be revealed.  Yet, the patient is often ignored, or targeted questions are asked without time for the patient to speak freely.

Some medical programs, like the one at Columbia University, are now including a more artistic approach to medicine, helping students to gain the typical medical knowledge needed while retaining the ability to see the humanity in medicine.  This allows them to feel the empathy needed to connect with patients and to grasp concepts that have been lost along the way.  This is a new trend which will hopefully continue, but in the meantime, many people are caught in terrible situations, caught in a sterile medical world without a sense of sympathy or empathy.  The walls may be as cold as the people attending them, and this is terrifying.

When patients and caregivers are faced with this world, where a phone call to the doctor becomes phone tag with voicemail and nurses, and care is placed on the back burner until insurance referrals can be completed, the world becomes more lonely.  There are so many who go through this, yet while they endure this sterile dilemma, they feel as though they are alone.  Sometimes, an entire day or longer can be spent negotiating care, handling prescription authorizations, and dealing with fine print.  Then, when this system is figured out, insurance changes, and everything must be repeated.

Caregivers and patients want to feel warmth when they are seeking care, because illness is suffocating enough.  The patient often loses a great deal of control and dignity in their life, and a reassuring smile, empathy, and 5 or 10 extra minutes of a doctor’s time can make them feel more confident in their care.  A happier patient should lead to a higher potential for recovery if recovery is possible.  A stressed and lonely patient may have more problems beginning with psychological ones.

So, where do we go now?  How can we make changes?  It is obviously not an overnight process.  There are games played between healthcare and insurance companies with a governmental referee, and the game is in overtime.  There are resolutions to be had, but we are overdue.  If more medical schools implement programs to encourage development of empathy to coincide with medical training, there could be positive results, however, there needs to be changes implemented in the government and in insurance companies as well.  Priorities need to change, and people need to demand better care.  The more people who stand up or speak out against these injustices, the more likely change will eventually occur, even if it is in baby steps.  What concerns do you have, and do you see options for change?  I would love to hear the opinion of others on this truly important topic!

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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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Who is the Caregiver, Really?

We talk about the caregiver and the life they lead, the work they do, and the challenges they overcome.  But, who is the caregiver?  How many times do they become known as the caregiver instead of by their name.  How often they become known for their tireless work, but not for who they are.  My mother and father are a prime example of this.  They do their work, caring for others, day in and day out, but they have names.  Denise and Larry.  They are human, they are people, they feel, they hurt, and they had dreams and goals.  They used to have a beautiful marriage based on love and passion.  It was stable and strong.  They are now seen by the world as the caregivers.

Denise had a hard life full of abuse growing up.  She was beat down by the people who should have lifted her up, including her father, the man she cares for today.  She fought through her own mental illnesses for years, and our family nearly fell apart, but she found an inner strength to overcome.  She has had many surgeries, and as she enters her sixth decade of life, she aches.  She has many conditions like fibromyalgia and arthritis that cause consistent pain.  She has serious stomach problems that interfere with her life on a daily basis.  But, she is the caregiver for others.  Even on a cold day, when her joints ache and it is excruciating for her to get out of bed, she forces herself to get up.  She is a person who hurts, but others just expect she will continue because she is the caregiver.

Denise had a dream to have a career one day.  She would have loved to go back to school, and if she would have been able to, she may be able to help now that her husband is unemployed, but she devoted her life to caring.  Everyone in the family said she could do it because she didn’t have a job, and now when she wishes she had that fulfillment and could help, the family who said she could do it has turned a blind eye because she is “just” the caregiver.  Her dreams were set aside, and her heart aches for what could have been, while others get to have personal fulfillment, she speaks to me of never being able to have her own life.  Denise is a beautiful, loving person, with unfulfilled dreams, and a lot of pain.  She is a caregiver, but also a human being.

Larry worked hard his whole life to build a bright future and retirement.  He worked for his family, served in the military, and worked his way up into management in various businesses.  He found success in director and VP roles, then became a caregiver with Denise.  He didn’t have a major role at first as he still worked full-time, but after the recession when he lost his job, one challenge after another hit him.  He is also at retirement age, and this makes it more difficult to find a job despite his incredible resume.  He is now working alongside Denise, but all of his work for over 40 years to save money for retirement has been lost due to the recession and the money lost on their house.  They live a very different life now.

Larry is an incredible man who feels his life that he worked for has been stolen.  He gives to caregiving each day, and worries about not having health care.  He struggles with the fact that he has been unemployed for so long.  Larry and Denise both helped to support and help many of the family members who have turned their backs on them now.  They have given advice, their home, and money, but now that they are suffering, they are alone.  These amazing people are human beings and incredible caregivers.  People assume caregivers can just keep going, and people move on with their goals and dreams, but seem to forget, caregivers have goals and dreams too.  They have had to sacrifice, and it would be nice if others could view them for the truly giving and loving people they are.  This is how humanity is reclaimed, by recognizing it in the people who give so much.

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The Effects of Caregiving on Relationships!

Caregivers have so much on their plate, and their lives are drastically affected by their role as a caregiver.  It is not often discussed, but when a couple takes on the responsibility of caregiving, the effects on their marriage can be incredibly difficult.  Granted, there are marriages that are strengthened, but there are many more that are not.  When my husband and I first discovered our daughter had half a heart, we were devastated.  Our lives were turned upside down, and we had medicine logs, sleep schedules, feeding logs, oxygen tanks, sat monitors, and other elements of her care that became wedged between us.  We were told early on to work together, and that many marriages fall apart in situations like ours.  I can see why, as it was a struggle, but our marriage strengthened.  We learned to work together, even when the odds were against us.  We became a team, and still found time to be a couple when we could.

We were lucky, and I am grateful that our marriage survived.  However, I see the effects of long-term caregiving in my parents.  They have been caring for my grandparents for over a decade.  While my grandma passed a year ago, they now take care of my aunt who has terminal cancer.  The road has been long for them, and while they were financially able to handle the monetary burdens in the beginning, the recession hit them hard, and shortly after, my dad was unemployed.  They were stuck in a house in New York with high taxes and a high mortgage, and they had to take a loss on the sale of it.  They lost everything.  Savings, retirement, stocks, and so much more.  They have to live a different life now, and while they had a bigger space to be caregivers in before, they now have a much smaller space.  It leaves little room for privacy.

I have watched them over the years.  They have taken on the overwhelming stress of caring for others with grace, but as each month passed, they lost part of themselves.  They were now bound as caregivers to others, and there was no room for a life of their own.  Their life was caregiving.  Time together was shortened, tempers rose, and the spark they always had for each other was gone.  They still love one another, but their love is now built around the foundation of being a team of caregivers.  My father snaps at my mother, and my mom gets more and more emotional because she is lost in her role.  They get weekly phone calls from family, and see Facebook photos of the life the rest of the family gets to lead while they remain in their job as caregivers.  They say they are grateful for the moments of joy they can give in their loved one’s final days, but they no longer have joy outside of this life.  Their marriage is a kiss goodnight, and in companionship, but the spark is still not seen.

It is difficult to watch a couple that always made me believe in the forever, fairytale marriage become so stagnant, but how could romance thrive in a caregiving home.  Their home is filled with illness and impending death, it contains oxygen tanks, medications that must be sorted carefully, nursing aids that help to bathe grandpa and my aunt.  Yes the home is filled with love and dedication as well, it always has been.  My parents are good people, willing to give everything they can of themselves.  Their home is sacrifice.  But, on the outside, I see the change, and I resent the family members that get to live their lives.  I know my parents feel this way sometimes too, as I have heard it in their voices, but they do not rock the boat.  They want to maintain peace, so they do not say what is truth.  They have been abandoned, and their marriage, their health, and their lives have suffered because of it.

This does not make them poor caregivers, it makes them human.  It is the world that looks in on the caregiver that assumes they are superhuman and must be able to take on so much without loss, but they do lose, and it is swept aside as a small price to pay.  I think our society has become diseased when it can be split so unequally.  When only a small percentage of families will take on the role of caring, and the rest take that as their chance to cut and run.  Where is the humanity in that?  If whole families could share the role of caring, there would be less stress and health related illnesses because it would be a combined effort.  Instead, often one person or one couple take on the entire gravity of caregiving.  How can marriages possibly survive intact.  It is time to hold people accountable and to bring the humanity back into families.  They need to know that once a week or month phone calls are not enough.  They need to realize that love cannot be seen in a heart that casts aside the weak because they can’t be bothered to adjust their lifestyle.  They need to realize that there is no room for selfishness in a family.  And, they need to open their eyes to the caregiving couple or caregiver who is suffering silently, hoping for a little relief.

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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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Recognize Your Influence!

When you are a caregiver, it is so easy to forget about yourself.  It is often the day to day activities, stress, and appointments that fill out the moments of your day.  It can overshadow the profound influence you have on others.  Whether you realize it of not, you are making a difference in lives.

Obviously, you are having an effect on the person or people you are caring for, but you affect others as well.  If you have children, they see the dedication and love you give to those you care for, and this leaves an impression on them about what it means to care for others.  You are also, if there are other family members who have moved on in their lives, having an impact on them.  This may not feel like a good thing, especially if you feel abandoned by these family members, but the effect you have on them may change them for the better.

The most important thing you can do is to recognize your influence because you deserve self-recognition.  It is great to be humble, but you should still be proud of the sacrifices and devotion you are exhibiting in caregiving.  It is a hard job, and feeling good about what you are doing can give you the much needed boost of confidence to continue in your role.  Be proud of yourself!