If there is one constant in life it is that caring for the disabled isn’t easy. It takes a very special person to pull it off and people like that are in short supply. That’s because there is a lot more to care than providing meals or occasionally looking in on them.While some of what I say is aimed at care givers in general, my real focus is family members who try to take on care giving.
Whether anyone wants to agree or not, when disability takes away mobility it also takes away a huge component of self-esteem. It makes those of us who are disabled feel burdensome and beholden. That produces an ever-building loss of pride and self esteem and it is tremendously worse than the loss of a limb or even paralysis. As a result, it is necessary for a care giver to be constantly on the alert in what they say, how they act, and how much they demonstrate that the disabled person is needed, wanted and valued. It’s a difficult life and a tough row to hoe. That’s why so many people aren’t very good at it.
When you’re a care giver you cannot wear your heart on your sleeve. Many of the things that a disabled person says will be complaint about their situation. When the care giver is offended or hurt by these statements, they show it to the disabled person and only succeed in making that person feel worse about themselves. What it does is takes away their avenue to communicate their feelings as well. This isolates them further, and in an awful way. It isolates them emotionally. It also makes the situation about the care giver rather than the person cared for. It takes a healthy dose of true selflessness to be a good care giver. The people they care for are broken and often in more ways that are invisible in contrast to the physical disability. It’s easy to forget that with family members.
Quite often all the disabled person is doing is communicating a need. They’re passing information. When hurt feelings or annoyance become involved, then the information isn’t passed. Even if it might be, then the disabled person will see the changes created by the communication as infliction of an unwanted burden. So in effect, getting what they want only makes them feel worse. This may seem like the proverbial Catch-22, and in a way, it is. But if things were approached without emotion on the part of the care giver and instead received with commiseration and kindness, each side would get what they want. The care giver wants to provide the best care and the disabled wants to be cared for in the best way. If that’s not the case, then the care giver needs to step back, regardless of their feelings, and help bring in a care giver who will fit the bill.
It is very difficult to explain the emotional make up of a disabled person. More often than not, the smiles and jokes they give and make are masquerades. On some level they know that complaint creates a chasm between themselves and others, and their requests for help or improvement only widens it. In the never ending circle, this only further isolates the person who’s disabled. Eventually isolation becomes the status quo and the disabled person begins to enforce it. To undo this type of damage takes nearly super-human effort that neither the care giver or the disabled are capable of. This is one of those cases where life and human nature can be a vicious protagonist.
Families, and spouses in particular walk an even tighter line than outside help. That’s because there is a higher expectation on both sides. The family doesn’t recognize the profound mental and emotional changes that are taking place in the person who’s disabled. To the family, they are still mom, dad, brother, sister, or whatever. So they have the expectation of sameness in their relationships. When the expectations aren’t met, resentment begins and only grows from there. The relationship becomes more strained, especially when the disabled person tries to make their wishes known. This is interpreted as even more complaint, further straining the relationships.
Disabled people are, as the expression goes, From Missouri. Don’t tell them, show them. They want to be engaged with and important to the people around them, especially those who took on their care. So its a really bad idea to try and provide care if they aren’t ready to make it a full time pursuit.
This doesn’t mean that care givers need to perform all the time. They don’t need to always be trying to have a conversation or be entertaining. On the contrary, just being present is more important than all the conversations in the world. Many care givers don’t realize that choosing to sit in another room and reading a book can be a slap in the face to their charge. Reading or watching television in the same room, even without conversation creates a companionable silence. And it should be voluntary.
The worst thing you can do is ask a person you’re caring for if they want a hug, or a back rub or some company. Those things should be natural. When a couple isn’t handicapped, they will reach for, hang out with one another and even be intimate spontaneously. To make the recipient of care have to ask for these things demeans their value; it turns them into a chore rather than an expression of caring and love. “Would you like me to love you? I have an opening tomorrow at 11:30.” Sure, they were trying to be nice and provide something wanted or needed, but what a lousy way to express it. That’s what I mean when I say one has to be careful in what they say and do. It’s all in the interpretation and frankly, what was meant is much less important that the sense it conveys. The world of the handicapped is a negative one; we expect tings to be negative and the only way around that isn’t talk, it’s action. If you really want to provide care, you have to be ready to put your money where your mouth is.
I can tell you from my own experiences, that to wake up after a nap to find my wife sitting there, reading a book or somethings is a warm and wonderful feeling. It’s a clear and unmistakable display of love and caring, showing that it’s important to the care giver to spend time with their charge, even if they’re asleep. It’s much the same as sleeping together; their weight on the bed, the warmth of her body, the sound of her breathing is a comfort and a ratification of my importance to her. Yet it’s a double edged sword; the absence of it is interpreted as a rejection. Is it fair? Probably not, but fairness goes right out the window with disability. The loss and indignities we suffer are never fair, making fairness just another casualty lost along with everything else.
It doesn’t matter a lot how the care giver feels about the complaints. The fact is that they are real enough to the disabled that they’re talking about it. The only drama that should pervade the relationship is one that pervades the levels of love and caring.
As I said, it’s a hard life to care give a family member. My comments may appear self-serving and dismissive of the needs of the person providing care. Certainly there will be rough patches; life is filled with petty disagreements and even a few whoppers. A care giver cannot turn themselves completely over to the task they took on. To do so denies them their own life, need and aspirations. So while care giving requires a 24/7 attention to detail and awareness, it doesn’t entail 24/7 presence or service. Instead it means that the time spent is spent well focused and possessed of the love and desire to provide the care they wished to give.
When care giving becomes a strain, it is important to recognize the importance of family and the support that love provides merely by existing. So family members should be prepared to recognize when the care is going awry. Then it’s time to bring in a third party to do the so called grunt work of care, leaving the family member –spouse, wife, brother, sister or child, free to simply love and enjoy the time they have with their loved one. Otherwise, along with mobility, the love and caring of the relationship is just another thing ripped from the hands of the disabled.
