When Nothing Seems to Work, Part 1

As educated care partners, we know a lot of techniques to use with our loved ones: be patient, be accepting, be empathetic, remember it's Lewy talking, go with the flow, keep my sense of humor, and on and on. But sometimes, none of it works. What then?

First, are you starting in the right place? Have you prioritized your self care? As educated care partners, we all know how important that is. But are you letting the urgencies of your loved one's care override your own seemingly less urgent needs? If you are, then no wonder nothing is working!

Before you can expect to be successful in managing your loved one's difficult behaviors, you have to be able to manage your own responses to those behaviors. Even when you know the correct response, you won't be able to do it if you are functioning in crisis mode. And that's where a care partner who has neglected their own needs can easily be. Overworked, tired, frustrated and hurting from back aches or more. This is the norm for many care partners.

"But I barely have time and energy to take care of my loved one. How can I be expected to spend more time and energy on self care?" they say. Like many of the things involved in dementia care, the answer to this question is that it may not be easy but it IS imperative. You, rested and alert, are your most important caregiving tool. You, overburdened and frustrated, are your most damaging caregiving tool. It is that simple! That's because:

• your attitude is all important. When you feel harried and overburdened, it is difficult to be patient and easy to be irritable, difficult to respond positively and easy to react negatively. You are less likely to get the result you want--which causes you more stress, more frustration and more burden.
  
• your loved one will pick up your feelings, personalize them and mirror them back at you, often magnified. Your stress becomes their anxiety. Your frustration with the situation becomes their anger at you.

Taking care of yourself involves time away from your loved one, time away from caregiving, time for yourself, doing things you enjoy. This is not selfish, frivolous or uncaring. Nor is it optional, any more than good wound care is optional. That is, you don't have to do it but if you don't, you pay the consequences. This blog isn't about how you can do this, but how you must, even if you have a limited budget. There are many ways and each care partner must choose which ones work best in their situation.

For ideas, see the many previous blogs on this site about self-care like this one, as well as many other online articles. Be sure to choose some in-the-moment practices, such as deep breathing. These shorter "quick fixes" help you to deal with immediate stress. Also choose some longer "me times", such as lunch with a friend or even a few days away. These longer respites allow you to relax, regroup and regain your focus. Revived, you can return alert and energized, ready to deal with issues that once seemed overpowering. You need both the quick fixes and the longer respites. Each plays a part in helping you deal successfully with the difficult behaviors that dementia presents to a care partner.

With ongoing self care, you can be a more alert, rested, relaxed, patient, positive, accepting, empathetic and responsive care partner. (Never perfect, mind you, but not the easily frustrated and irritated person we tend to become when we feel overburdened.) Only then can you hope to deal successfully with your loved one's difficult behaviors. Until then, you are working at cross purposes, trying to fix a damaged system with weak and failing tools--tools that actually foster worse behaviors, not better ones.

Next week, more about dealing with difficult behaviors, focusing on some of the things that can't be changed but might be worked around.

For more information about Lewy body disorders, read our books: A Caregivers’ Guide to Lewy Body Dementia Managing Cognitive Issues in Parkinson's and Lewy Body Dementia Responsive Dementia Care: Fewer Behaviors Fewer Drugs Riding A Roller Coaster with Lewy Body Dementia: A Manual for Staff
Helen and James Whitworth are not doctors, lawyers or social workers. As informed caregivers, they share the information here for educational purposes only. It should never be used instead of a professional's advice.