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.


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.


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.


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’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.


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.


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.