I am part of a group on Facebook that is for support of those that are caretakers to someone in their family. When I moved in with my Gram I joined it, not because I felt I was her caretaker but because maybe they had some advice on how to move from the stubbornness or some exercises or maybe just people to vent to when my feelings had been hurt.
Recently I did become her caretaker and I'm not going to tell you how hard it is or how stressful. You might already know that. But I came across the below note and it really rang some bells and truths for me. I've already had others complain and try to pass it off like I'm doing something wrong. Just anything. And I am not sure if it's because they are jealous, upset or what. But I am doing my best and that is all there is to it. None of them know. They can pretend to know, but they don't. Visiting someone weekly or even daily in a nursing home or assisted living isn't the same thing. Making someone lunch daily isn't the same thing. The day you have to wipe your mother's bum then you can judge me.
From a support group on FB:
Someone on an on-line site commented that if you haven't been there, you cannot really understand what it's like to be a caregiver. A reply to that comment very aggressively stated that the responder didn't understand why not, that just because you haven't done it doesn't mean you don't have sympathy for those who do.The responder actually proved the first poster's point. People who have never been caregivers really, truly CANNOT understand what it is like.
Sympathy and empathy are two different things. And that doesn't mean that sympathy is bad, but sympathy alone does not grant understanding. Sympathy is what you get from people who have never experienced what you're going through, dealing with and experiencing. Those have never walked the journey you are currently making are only able to look on, not join in. They may feel sorry for you, but they can't comprehend the reality of what you're enduring.
There is a huge disconnect between caregivers and those who turn away. The caregiver sacrifices a significant portion of his or her life to take care of another person. Those sacrifices cover many areas: financial, time, personal relationships, personal time - the whole gamut of a life. Many caregivers have little or no personal life of their own, because they are constantly in attendance upon the person who needs care. It devastates their finances, and wrecks their relationships - even marriages - and interferes with raising their own families. And it can permanently affect, and destroy, the caregiver's health, because of stress and anxiety, even personal injury. It's very easy to incur permanent back injury while trying to assist those with mobility impairments.
People turn away for all sorts of reasons. For some, it's because they don't know what to do or say, or how to help. They feel helpless and inadequate, and no one likes to feel that way, so the tendency is to avoid a situation that would cause those feelings.
For all too many, it's selfishness, pure and simple. They just don't want to give up anything of their own lives. But they are not going to admit that, especially to themselves, so they say, "Jane's taking care of mother, so they don't really need me." They turn away so they don't have to see - and admit - that Jane really needs a break. If they don't see it, their conscience won't prod them into admitting how selfish they are.
Too many caregivers end up hearing blame and accusation that they aren't taking "good enough" care of the patient. Sometimes, unfortunately, it's actually true, but that really isn't always because the caregiver is being abusive or uncaring. It can be because s/he is overwhelmed or burned out and just can't cope any more.
A lot of times that accusation comes from someone who doesn't want to admit that they should be helping, so they find someone to whom they can divert the blame - the caregiver.
Caregivers are frequently isolated socially. The only contact they have with others is about the patient's needs and care. No one really seems to give a tinker's dam about the caregiver's needs. Some of them reach out for support from groups, but many cannot even get out of the home to go to a group support meeting. There are some good on-line support groups, which have been literal life-savers for their members, but not everyone has access to a computer, or even the time to use one if they have it.
We need to be educated not only about how to care for our loved ones, but on how to take care of the caregivers.
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