The life of a caregiver is a stressful one, a stress that seldom lets up. I became the caregiver twenty five years ago to my son was born with an arachnoid cyst on the brain. This life has not been easy, and it has been filled with stress. There have been moments of tremendous pain, but moments of joy as well. It would be difficult, if not impossible to understand the life of one who is a constant caregiver, unless you had a true opportunity to walk a mile in the shoes of that person.
What is it like to care for a child that “never grows up?” Well, for one I worry about who will take care of Mitch after I am gone, and what might happen to him. I never for one second relinquished my responsibility for him, not even as an adult. I feel that The Almighty gave me this stewardship, and that it is my duty and calling to care for him. But having sole emotional, physical, and financial responsibility for a multi-handicapped individual such as Mitch has taken its toll.
For this reason I feel that I am qualified to give others my perspective on how to survive being a full-time caregiver. I haven’t always taken my own advice, because I have had to learn how to cope through my own experiences. I know there are other people in the world like me who need you to understand them. They may not look like it, but they are some of the more emotionally vulnerable people.
People probably look at me and wonder why I haven’t attempted to be more of a success than I am, they may look at me as lazy or unambitious, because they don’t see the whole picture. Besides raising six children alone, I have made taking care of Mitch my job. My oldest son David helps me with this task, however Mitch prefers to be with me, and he listens and works better with me. It is hard for me to imagine having the emotional and physical strength that it would require to hold down a full-time job.
This is what caregivers would like you to understand:
#1 They aren’t lazy or unambitious, they actually work very hard
#2 The work they do is for very little pay, they do what they do for love not for money
#3 A Caregiver is not always in tune to their own emotions because they are constantly concentrating on the emotional health of the ones they are caring for.
#4 A Caregiver is terrified of getting sick or picking up a disease because this reality would mean that her ability to care for the disabled person in her care would be limited. Who will care for Mitch if I get sick, and will it be the quality of care which I would wish for? How can I get better amidst the stress of caring for someone while sick?
#5 Life can get frustrating with so many pressures, demands, and disappointments
#6 Life gets lonely as family and friends go about their lives without you. The truth is most people don’t hang around long enough to help long term. They have their own lives, and they want to live it and we have to learn to let them go without inflicting them with guilt.
#7 The caregiver sometimes feels shame for how inadequate she feels, or for needing help
#8 Exhaustion on any level: physical, mentally, emotionally, and spiritually: These emotions are not always experienced simultaneously, but at one point or another each emotion will be felt.
#9 trying to hide these above emotions, and pretend that your life is normal
The above is some of the things that a caregiver deals with regularly, and the only combatant is acceptance that your life is different than others lives, and that you can make the choice to be happy (because happiness is a choice). After spending some time in grief and mourning for the loss of the person “who could have been,” had the handicap not occurred, many then choose to embrace the person for who they are, realizing that beauty comes in many forms. I think that disabled human beings are some of the most beautiful, pure and loving people that I have ever met. Then if one chooses, they can learn to develop a positive attitude. They learn that happiness and joy can be felt even in the midst of trial. Some of the emotions felt are:
*Joy, in being in the presence of one who can so freely love
*gratitude, for what you have been given
*Pride, in what you’ve been able to accomplish even in the face of adversity
*Love, for the one you care for, and for all those around you
*Self-respect that you’ve stepped up to the plate and made a difference
Remember that all of your feelings are valid. Feelings in and of themselves are not wrong, they are simply signs that you are human, and that you are engaged in life, that you care. You need to:
*Feel fully what you feel
*Seek out people who are supportive and understanding
*Don’t be afraid to ask for help, we all need it sometimes
Holding in your feelings over the short-term can be an act of love, but long term suppression of your feelings causes a build up of stress and can be a serious mistake on many levels. I know. I am the master at suppressing my feelings, and there is a price to pay. So,
Express your feelings! Find a safe place, a person, a friend or a family member and don’t be afraid to talk. In fact one of the responsibilities of a mature caregiver is to find ways to make that happen. Different people have a variety of ways to express their feelings, such as sewing, painting, and drawing. I like to ride my bike and listen to music, an hour spent just by myself for contemplation does a world of good. I also like to write, which is why I write on this forum, writing helps me to relax.
The best way to develop a friendship is to be a friend, sometimes allowing your friend to vent her frustrations and feelings is good therapy for both you and your friend. Don’t be so self centered that you feel that you are the only one who has problems. Everyone has problems that should be acknowledged. It is easy to feel alone and like you are the only one suffering, and this can lead to self-centeredness. Helping others is often a great way of taking your mind off of your own problems.
One way you can help is by truly learning to listen, by making direct eye contact, nodding your head and asking appropriate questions. Show that you really care by making that person the center of the discussion by not allowing distractions. Instead of thinking about what you want to say next, intently listen to what is being said. Some forms of communication are not verbal by watching body language, and reading in-between the lines. This is also an important tool to learn for the disabled person you are caring for who has frustrations of their own.
Mitch never learned to talk verbally, but he has a whole set of tools for communication which we have learned to understand. We know when he is happy, sad, angry and excited. Mitch loves to go for car rides and if he feels like his car ride wasn’t long enough he will stomp his feet extra hard walking up the steps to home to show that he is disappointed. As difficult as this journey was for us and still can be at times, Mitch is one of the most wonderful people I know.
The reason I care for Mitch rather than put him in a home is because I love him and I made commitments to each of my children when they were conceived, that I would be the best parent to them that I could be. No matter the problems we will overcome them together, and I will never abandon them or leave them alone.
“Where your cyst is depends on what kinds of symptoms you have….once you become systematic your life becomes a living hell. …I am under the conclusion that arachnoid cysts are dangerous to your mental health and general well being because you are always fighting the pain you are in, it makes it difficult to control other aspects of your life, such as communicating.” A quote from the Arachnoid cyst foundation.
This is Mitch’ story, part one:
This is Mitch’ story, part two: