Care partners often feel that that they don't have the time or the energy or the know-how to do it all or do it right. No wonder they are usually stressed and overburdened! That doesn't have to be. Better information can actually change the workload, but even more importantly, it can change a person's expectations. These two together can change a person's stress level. And when a care partner's stress level is lower, so does their loved one's along with their stress-related behaviors, which decreases the workload.
Well, that's just great, you say. But I know what needs to be done and I know that it takes more time, energy and skill that I often have.
Well, first, let's look at that workload. What doesn't really have to be done? Start prioritizing and do only those things that need doing now. For example, dishes don't need to be done after every meal--or even every day. But there comes a time when you likely will need help. Dementia is an expensive disease. One reason is that extra help often becomes a necessity, not a luxury. If, even after you've done everything you can to cut down your workload, you are still feeling overburdened and stressing out, the time has come to find help.
Admitting your loved one to a care facility is something that most care partners put off until they have no other option. You might want to reconsider for a couple of reasons.
- The earlier a person enters a care facility, the more likely they will be able to become a part of the community and not simply someone sitting alone in their room.
- When someone else provides the physical care that wears you out and keeps you up at night, you can return to being family instead of caregiver. Nancy, a very reluctant care partner who finally made the move reported, "I so wish I'd done this sooner. We've gone back to being husband and wife and I love it." No longer overworked and under-rested, Nancy was able to provide her husband better emotional support, something that only she could do.
- Call your local Area Agency on Aging and ask about organizations that can help with the cost or even provide some care.
- Talk to your church leaders and secular organizations like the Kiwanis and the Elks.
- If your loved one is a vet, contact the VA. Such organizations often have groups that visit and often provide non-nurse-related help such as lawn mowing or vacuuming.
- Finally, let go of your pride and ask family members, friends and neighbors to help. Family might be able to share expenses, or an adult child might be willing to spend nights with your loved one so that you could get needed rest. Friends and neighbors can spend an hour or so with your loved one to give your a break, provide meals or do house-or-yard work.
Make sure you include some personal time. This is not a luxury. It is what refreshes you and keep you going. It should include not only some time to go to lunch with friends or yes! a support group, but also some quiet time at home for something like reading or a hobby. And don't forget your two-minute breathing breaks. Interrupting a stressful moment for one of these can cut down on a lot of friction!
Next week will be more about where you can get help.
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
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.