It was Thomas Jefferson who said, “slavery is like having a wolf by the ears; you don't like it much but you don't dare let go.” Experience has taught me that there are many of you out there who feel the same way about caregiving.
There are over 40 million unpaid caregivers in this country and as I have asked you in the past, how many of them do you think were put on this earth to be caregivers? Let's be honest, being a caregiver is not everyone's calling and that doesn't make them bad people. Narrowing the scope, there are over 16 million unpaid or informal caregivers of people with Alzheimer's disease. Two-thirds of them are women and one-third of them are daughters.
I read a recent article that used the example of the frog in the pan of water as a comparison to what caregivers are going through. You can turn the heat on and the frog will have no reaction to the warming water until it's too late. In other words, you may not be aware of the toll caregiving is taking on you until it's too late. The purpose of this article is to help you avoid the boiling point.
As we approach a New Year, is it time for you to make a resolution that you are going to take better care of you? It's not just a good idea, it's imperative if you are the one in the role of primary caregiver.
There are a number of valuable resources available to you that can and will make your job easier, if you decide to take advantage of them. I have always encouraged the entire family to be part of this important process. Have you approached them?
They don't necessarily have to be the one who toilets or bathes your loved one, but there are other things they can do for you that will help take the pressure off. Can they do the laundry, help with housekeeping or take the patient to appointments? If appropriate, are they available to take them for a ride every couple of days and give you some quiet time or a chance to enjoy going out and getting pampered, or simply to get a haircut? If you don't have family nearby, how about asking your friends? You'll never know until you ask. I was honored when a member of my church asked me to spend some time with her spouse while she ran some important errands.
When families first learn about their loved one's dementia diagnosis, I encourage them to become students of the illness. There are wonderful books available, including mine ("Join the Journey — Care for The Alzheimer's Caregiver") that will help you and your entire family all get on the same page; something that is critically important as everyone needs to understand what you're going through as well as the loved one you're caring for. "The 36 Hour Day" and "The Best Friends Approach to Alzheimer's Care" are two other very good resources.
The Alzheimer's website, www.ALZ.org is another spectacular resource that's always available to you. The association has a 24 hour Helpline that you can call and get the answers to questions in 170 different languages seven days a week; 1-800-272-3900.
I was talking with a gentleman recently who has been a local resident for years but never knew there was an Adult Day Center right in his home town, staffed by professional and experienced caregivers. And how about visiting a support group? I have facilitated one of these in the past and I can confirm they are more valuable that you'll ever realize. Reach out to your local human services agency to learn what's available in your area.
If you are going to be able to take good care of your loved one, the process begins with taking good care of you. There's no reason for you to “go down with the ship.” Hopefully, your loved one wouldn't want that for you.
Questions? Email me at email@example.com. Join the Journey.
Robert E.P. Elmer III, of Stonington, is a senior care adviser and Alzheimer’s care specialist. His website is at www.careforcaregivers.org.