Each day millions of family caregivers in our nation quietly share their compassion, out of sight and unnoticed. These individuals are average people just like you and me who come from all walks of life. Yet each one is as special and unique as the situations they find themselves in. They are unsung heroes because they are living examples of kindness, generosity and unconditional love.
Being a family caregiver is daunting. There is nothing easy about having another human being completely dependent on you for everything. Each day, and often through the night, a caregiver devotes themselves to the needs of someone they care about. It can be a commitment that lasts for years or even decades. The personal sacrifices they make on behalf of their loved one are staggering. They put their own lives, hopes, dreams and aspirations on hold as they try to give that person the best quality of life possible.
A family member who shoulders the responsibility of caring for another person’s physical, mental and emotional needs often has to learn to perform routine procedures such as giving injections and ensuring the proper use of medical devices such as feeding tubes. Their daily routine can involve administering medications, performing specialized treatments, bathing their loved one, turning them in bed, dealing with infections and other forms of illness and with elimination and incontinence issues. They also attempt to offer intellectual stimulation to keep their relative’s mind as sharp as possible, and they do everything they can to ensure their physical safety at all times.
Here are just a few examples of situations where people are thrust into the role of caregiver:
Being the parent of a child with a profound intellectual challenge which is present from birth or occurs as the result of an accident.
Being the parent of a child with a profound physical challenge which is present from birth or occurs as the result of an accident.
Taking care of an individual who has had a stroke.
Caring for a person who has a traumatic brain injury or some other form of debilitating injury.
Taking care of a loved one with a progressive disease or some other serious illness.
Supporting someone who is dealing with mental illness.
Providing for the needs and safety of a person with dementia.
Compassionately caring for someone who is terminally ill.
Of course there are many other life altering situations where a person requiring 24 hour assistance is cared for by a spouse, parent, grandparent, sibling, aunt or uncle.
If you personally know individuals who are serving as caregivers than you have probably witnessed their commitment, dedication and compassion. You would be performing a true act of kindness if you volunteered to help them in some way that would make their life just a little bit easier. It could be doing their grocery shopping, mowing their lawn, running a few errands or simply spending some time with them so they can escape the pressures of their world. Any thoughtful act would be meaningful because it would let them know that someone cares about them and appreciates their sacrifices.
Caregiving is an important example of the value of family. It is one thing to hire a professional to come into someone’s home to take care of their daily needs, but it is altogether different when a relative willingly assumes that role. Of course as a disease, disorder or disability progresses it sometimes becomes more of a challenge than a family member can safely handle. If an individual’s medical needs become so complex that it is no longer possible for a loved one to properly care for them than it becomes a necessity to seek out those with the correct training and experience to take over. But until that time comes, many families lovingly do their best to take care of their own.
Obviously the duration of support that needs to be provided varies from situation to situation, but in the case of a child who is born with a severe disability, the role of a family caregiver can last a lifetime. It is a constant commitment that demands complete dedication. Their entire life revolves around the responsibilities of meeting the needs of that child, and their sense of obligation is in the back of their minds every waking moment of the day. But no matter how challenging it becomes they persevere because the depth of love they have for their son or daughter is unlimited. It has no bounds. It is total and complete.
However, to be a 24 hour caregiver in any situation can become overwhelming, which can lead to physical, mental and emotional exhaustion. It can also be incredibly lonely. Because of the inability of the person to function independently they are often homebound and sometimes even bed fast. This can cause severe isolation for both them and their caregiver. The lack of human contact can be suffocating. In some cases the person being cared for is unable to maintain a normal routine. They may remain awake all night or sleep intermittently in short intervals. Trying to care for someone when you are not getting your own rest can quickly deplete your energy. Extended periods of intense caregiving can lead to burnout and even resentment of the situation or the person involved. That is why it is crucial that a caregiver be given the opportunity to step away and take time for themselves. They must have the chance to renew themselves so they can withstand the rigorous demands they face on a daily basis.
Although caring for a loved one’s physical needs can be incredibly challenging, it is perhaps even more emotionally devastating to deal with someone’s mental confusion, loss of memory or lack of awareness. To constantly care for someone you love with all your heart, and who you know loved you, but who no longer recognizes you or begins to fear you is painful. It hurts each time they don’t acknowledge you or they resist your help. People with mental or emotional issues may begin to view their caretaker as an enemy. They may begin to resent their presence and become uncooperative, all of which can make the challenges of providing care even more demanding. In the case of those with severe intellectual challenges they may not understand that someone is trying to help them. They may only see that assistance as something that is keeping them from getting what they want even if their desires might not be the best thing for them in the long run.
But of all the scenarios that involve a family caregiver, it is end of life situations that are perhaps the most difficult of all. No matter how hard a person tries to ease the pain and burdens of someone who is terminally ill they eventually lose the battle. After being a caregiver for months or even years it is difficult to deal with overwhelming grief while simultaneously attempting to adjust back to some semblance of a normal life. Sometimes a person experiences guilt caused by worry about whether or not they did all the right things in their attempts to meet the needs of their family member. They wonder if there was anything more they could have done. They feel lost after giving everything they had to keep their loved one comfortable and at peace, and although they knew the outcome was inevitable it is still heartbreaking to accept.
Chances are good that somewhere in your neighborhood, at this moment, there are individuals who are caring fulltime for a family member. The fact that you are unaware of those situations demonstrates just how confining life can become for those involved. Out of public view, with no one to witness their love and concern, these men and women do what needs to be done each day as they struggle valiantly to maintain quality of life for their loved one.
At some point in our lives, any of us could become a family caregiver. At that time we will each need to summon the strength to do whatever is necessary to provide for someone we care about. It is the responsibility that comes with being in a family, and it’s the result of the love we have for those who are so important to us. On the other hand, it is just as likely that someday we will be the one who requires a caregiver. There is always the chance that we will become dependent on another person to assist us with our personal needs on a daily basis.
Family caregivers love, support and protect the most vulnerable people in our society. They provide the best possible care they can for their relative, not only because they know it is the right thing to do, but also because they realize that if the roles were reversed that person would do the same for them. They willingly give of themselves to enable their loved one to live and to die with dignity. It is the essence of what makes a family. They are common people who voluntarily step into uncommon circumstances. They embrace the opportunity to help. The courage, selflessness and compassion they demonstrate is a lesson for us all. They are living examples of what is good and decent. They represent the best that humanity has to offer, and they do it all without reward and too often without acknowledgement, encouragement or thanks.
Being a family caregiver is the ultimate act of love.