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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4 thoughts on “What No One Tells You About Caregiving!

  1. You’re so right, Tina. The caregivers are locked in their own secret gardens of caring due to constraints of privacy (mental illness); time (home caregivers); risk of infection (spouses of cancer patients with suppressed immune systems), and just the systemic lack of time and space to be with other caregivers and share stories. I can see the benefit of support groups but when you’re a full-time caregiver it’s hard to take time for that when you’re already neglecting major parts of your life. [As a parent of a young adult with mental illness I find that caregiving is very lonely, because you are actually separated emotionally from the person you care for, and privacy rules preclude even talking to the therapist or doctor.] I think too that there is something really valuable in being with other people face to face rather than online, but I’m wondering if an online group would be helpful for those who can’t get out for an hour? I think, too, that there is something to be said for having a skilled facilitator to guide the group. In Narrative Medicine we lead reflective writing workshops that are designed to give people “time out” from their stressful lives and give them a chance to think and write about their lives in a safe environment with other people. What do you think about an online reading/writing support group? Would your followers be interested?

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    • Hi Gillian! I agree, being in a group, face to face an make a difference. I also agree that it can be difficult for caregivers to find the time when they are giving so much to caring for others. I am not sure how well an online group would work, but I would be interested to see. I think once I get some more followers I will pose this question on a blog. Perhaps there is a way I could add a chat page to the blog for support as well.

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  2. Yes being a caretaker brings many surprises. It is a tough job. It is a rewarding job. It is a job many have no choice or some do. It is a 24 hour job 7 days a week. There is freedom no more. It is loss of self It is.

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    • Thank you for sharing your thoughts. It has been so difficult for you, and I am so glad you can come here to express what is often held in. It is important for you to be able to talk about your feelings because in caregiving, you are forced to cast your feelings aside. You need that chance to express yourself.

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