In caregiving circles we hear a lot about the word "support". Family caregivers regularly seek supportive relationships with other caregivers, knowing they can provide the emotional sustenance needed during difficult times.
What support doesn't do however, is change the circumstances under which you are living. It doesn't relieve you of some of your responsibilities. It doesn't minimize the job at hand. That's the work of a different word - and that word is HELP.
We looked the word help up in the dictionary. There were 22 different entries. Here are just a few of them----
Providing help is something that caregivers know a great deal about. It is what we do every day. The question is how often does someone lend you a helping hand? If you are like most caregivers, the answer is not often enough. According to NFCA's Caregiver Member Survey, 65% of caregivers do not get consistent help from other family members.
But how do you get the help you need, and where do you find it? Just as you have to reach out to get support and be open to receiving it, you need to reach out and ask for help, and know how to accept it when it is offered. This isn't always easy.
I have found that the first step in getting help is the recognition that caregiving is far too big a task to undertake alone. This is true for all caregivers, but particularly for those who are assisting loved ones with multiple needs, or providing round the clock care.
Some people have a hard time admitting they need help. They feel guilty even thinking they can't juggle everything themselves, or they believe no one else can do their job as well as they can. They forget that the totality of caregiving, like all jobs, is made up of lots of individual tasks, not all of which are of the same importance, or require the same skills.
Because caregiving is such an emotional experience, I believe the best way to get a handle on the help you need is to create a very unemotional list of all of the things that need to get done- cooking meals, mowing the lawn, filling out insurance forms, driving your care recipient to the doctor, helping her dress. Making the list is fairly easy. It's also a great way to vent your anger and frustration because it shows you in black and white that you really do have a lot on your plate.
Once you've got your list of tasks, group them into distinct categories - personal care, household chores, transportation, etc. Then make another list of all of the things that you worry about - what will happen if your husband falls out of his wheelchair when you're not home, where will you get the money to pay for medications your insurance doesn't cover? Group your worries into categories, such as emergency situations, financial issues, your own health.
Go ahead - make your list! There's no pure science to it. You may find it difficult to get started, but you're bound to feel better once you're done because, finally, all the things you do will have a name, and fit into logical categories.
Now that you've made your list, pat yourself on the back. You've accomplished a great deal, and you should be proud of yourself. Putting things down on paper, and organizing them into groups, has a way of clearing the air by creating order out of what seemed like so much disorder. It serves another purpose as well. It gives you a tool to use in helping yourself get help, and that is its real benefit.
You've got one more thing to do however before you are ready to get help. You need to review your list and decide which items on it you hate doing more than the others; which ones you enjoy, and which ones you believe that you really must continue to do yourself. If after reviewing your list, you decide that you can't possibly allow someone else to do any of the tasks, then you need to review your list again. The idea isn't to prove how indispensable you are, but rather to help you improve the quality of your life, and that of your loved one as well.
Now that you've identified your priorities, you have a very useful document. Your list can be a source of strength and your means of managing all of the myriad things you have to do because it identifies all of the tasks that can be delegated to others. You can use it to reach out for help with dignity, and from a position of knowledge.
Asking for help with a list in hand is very different than complaining about your situation. You will be seen as a highly resourceful person who is seeking help in dealing with a very difficult situation. When you can do that, you will inevitably find people who, in one way or another, can either give you some of the help you need, or help you find others that can.
There are some people out there who are saying right now that there isn't one single, solitary soul that they can share their list with, but that isn't true. There is always someone, a good friend, another family member. What about the nurse in your doctor's office, a clergyman, or the employee assistance counselor at work? The first person you share your list with may or may not be in a position to actually help you themselves, but they can give you the benefit of their ideas, and two brains focused on solving a problem is always more powerful than just one.
There's another benefit as well, in the process of sharing your list, you'll also be sharing your thoughts and feelings thereby lessening your isolation and gaining some of the support you need to sustain you until you're able to get the actual physical help you now know you want and need.