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Women as Caregivers

I posted this to my other blog a couple of months ago, and it was quite popular.  I think it is important for women to read, and I wanted to post it here as well since this page is about caregiving.

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There is a quiet that lies within a woman, at the base of her being. This quiet is not a lack of sound, but a lack of fear, pain, and worry. I know this place exists within me, but I had abused its existence. I trampled on it with the chaotic dances of worry that filled each corner of my day. I allowed my soul to be blackened by irrational fears that made their way into the few moments of sanity I had left. I had fallen into the pit of modern humanity where I was tainted by the current world of separation from the divine and nature. I pushed my seat of quiet so far below my consciousness that I could not seem to reach it. It called to me from dreams and I longed for it when my day seemed filled with endless moments of suffocated being.

Women as caretakers, whether caring for children, parents, other loved ones, or patients, tend to place the cared for in front of themselves. It is a state of martyrdom that becomes all-encompassing, and even through the sheer exhaustion, comfortable. The endless moments of caring for others, despite the stress involved, allows the caretaker to avoid the self. I could avoid looking for that hidden piece of quiet because I was afraid of being whole. This sounds insane for sure, why would one not want to feel complete and whole? Because it is easier to mourn the loss of one’s soul than to face one’s truth. There is a lot of work to be done to find that quiet space. Like a hoarder of physical items, I have hoarded unnecessary fears, painful memories, and enough worries to render the average person mentally disabled. To find myself, I had to clean up my mess. It took time, but the real me with dreams and ambitions lived beneath the layers of baggage. She was there, and I found her. I found myself as a person existing beyond caregiving.

While this may seem like an unusual occurrence, I think that many women who live as caretakers fall into this abyss of confusion until it is safer to remain there. Then, the idea of ever leaving the womb they have fallen into is terrifying. Unfortunately, this leaves many without a solid foundation or a connection to a deeper part of themselves. They are lacking one of the greatest gifts they have been blessed with. This is when the journey must begin, because as each bit of debris is removed from oneself, the soul becomes lighter. A total cleansing can make one free, and a free soul has a greater potential for touching the divine that lives within themselves. They connect through inspiration and discovery. I survived this process, and came out stronger, but so many caregivers are caught in this pit, forgetting who they are. It is crucial to reach out to them, and help them to see that they are beautiful people and should not sacrifice who they are to be a caregiver, but supplement who they are.

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Importance of Imperfection!

It can be difficult to realize that we all make mistakes and it is okay to do so as a caregiver.  There is a level of expectation that we often hold over ourselves as we embark on each new adventure.  Whether caring for elderly, mentally ill individuals, or other ill loved ones, challenges will rise, and we wonder whether we could do things differently.  There are always going to be those moments where we question ourselves, and consider whether our decisions have had negative impacts on the ones we care for, but this needs to stop.

As caregivers, we take on this superhuman quality, and we think we must do everything without fault, but the reality is, we are human.  Mistakes happen, and it is expected.  We do not receive a handbook, when we become caregivers, that lays out the specific challenges we will face, the personality of the individual we will care for, and the various ways to handle each situation as it arises.  As much as I wish that handbook existed at times, I realize the journey without one has its rewards.  I have learned how strong I can be, how resilient, and especially how creative I can be with problem resolution.  I have also learned to embrace the imperfections that make me who I am.

While there will always be those moments of questioning that follow tragedy or bumps in the road, the more that we can accept our own faults, the more open we will be to caring and loving those we care for, and ourselves.  The sooner this understanding happens, the easier it will be to move past the blame, and guilt that can only weigh down any progress of living.  Caregiving is difficult enough without us getting in our own way.  So, the next time a problem arises, remember to accept any imperfections because they are what make us human.

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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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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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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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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.