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.


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.


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.


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.


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.


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!


It’s Okay to Ask for Help!

Sometimes, it is easier to let your pride get the best of you, and to take on all of the work and stress that goes with caregiving.  In fact, it may even make you feel as though you are accomplished as you take on multiple appointments and errands in a day.  Unfortunately, the excessive amount of work that goes into caregiving can also lead to burnout.  It can cause you to become overwhelmed, and lead to illness in yourself.  This is why it is okay to ask for help.

Everyone needs a day off, or a break from the mundane aspects of their lives.  Sometimes, just some help with the tasks that round out each day can relieve some of the stress that seems to be weighing you down.  Every caregiver should have people they can count on to be there when needed.  If you do not have this, find these people now.  Here are some ways to begin this process.

1.  Family.  Now, I know that not every family is equal in caregiving.  I have seen how this affects caregivers personally, and it is heartbreaking.  However, this is the best place to start.  Figure out what family members are there to help, even if it is only once in a while, and make a list with their possible availabilities.  In fact, you can even call and ask if they can commit to provide relief once a week or even just once a month.

2.  Friends.  If you have friends who could be there in an emergency, or when you need a little relief, make note of them on your list so you can call on them when you need them.

3.  Neighbors.  Try to find at least one neighbor who can be trusted to check on your house or take on a task if you need them.  This is critical when you spend a great deal of time in hospitals with your loved one and may need someone to check on your home.

4.  Outside services.  Some communities, insurances, and government agencies provide various types of services to help caregivers receive help with tasks and even to provide respite care.  Check into any resources you may have in your area.

Finally, realize that you do not have to do everything, and it is okay to ask for help when you need it.  People may not always be there, but you may be surprised by the ones who are.