Abandonment of Alzheimer's caregivers is common. In surveys, more than 60 percent of caregivers say they need more help. Often this is code for -- please HELP me.
By Bob DeMarco
The Front Row
I first published this article on the Alzheimer's Reading Room in April, 2009 --Are Alzheimer's Caregivers the Forgotten? I received more than 100 direct emails on that article, and they continue to come in as caregivers continue to find the article via Google search.
The article brings out strong emotion. This may or may not surprise you. The emails often start with a Thank You. Caregivers are relieved to learn they are not alone, and that what is happening to them -- abandonment -- is happening to millions of others.
I want to make something clear here. Not every caregiver gets abandoned by family and friends. Many families rally together in an effort to care for the person suffering from Alzheimer's disease. Many of these stories are wonderful, and I should write about them. I will.
Nevertheless, abandonment of Alzheimer's caregivers is common. In surveys, more than 60 percent of Alzheimer's caregivers say they need more help. Often this is code for -- please HELP me. A cry out to their family and friends.
Please pay attention.
A long time ago I learned the importance of taking control of what it is you can control in your life. Regardless of the result of your action(s), this brings with it emotional and psychological relief.
There are alternatives to continually "venting" or complaining about the lack of support your are receiving from family and friends.
This is what I suggest.
Ask your doctor for a written (hard copy) explanation of the diagnosis. This will surely contain the words dementia, and/or, probable Alzheimer's disease.
Take that letter and make copies. Then send it to family and friends. Send the hard copy, not an email.
I know some of you might be reluctant to do this. However, if you are continually burdened by the idea that you are not being helped; or that, you are being abandoned -- take control of you own life.
Don't start thinking about what the person is going to do when they receive this hard copy letter containing the dementia diagnosis. Think about taking control of you own life and situation.
It is impossible to predict what anyone might do when they receive the hard copy diagnosis. That is not up to you, it is up to them to decide.
They might respond in a positive way, and you might open a real dialog about how they can help. Issues like money and respite time.
They might call and scream at you. Well, that is okay because you just took control. Let them have at it. You might be surprised to learn that even the most negative reaction brings you emotional and psychological relief.
You took control of what YOU can do.
After doing this, you might find that you stop venting and complaining about the situation. You did what you could do. Time to move on.
Time to get focused on becoming the absolute best Alzheimer's caregiver you can be.
Remember, you are living your life. Don't let others live it for you. Take control.
At the end of the day, you will know what you accomplished. I am confident when I say this. It won't really matter what anyone else thinks. Deep inside you, you'll know what you did.
Don't worry about getting recognition for your accomplishment as an Alzheimer's caregiver. You won't be able to go far, not even down the next block, before you'll meet another Alzheimer's caregiver.
They'll know what you accomplished.
And so will WE.
Original content Bob DeMarco, the Alzheimer's Reading Room