Care Partners Pt 3: Burden and Help

Last week's blog was about the challenges of care partnering. While there can be blessings which last week's blog also discussed, the challenges can be detrimental to good care and as well as being actually deadly. Even so, if you are like most care partners, you want above all else to provide the best care possible for your loved ones. Thus, you need to stop and look for ways to do this and maintain your own well-being so that you can keep on doing that best job you can.

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.

If your loved one is still at home and hiring help isn't in the budget, review the budget and see if you can fit it in after all. It is that important. The help doesn't have to be with your loved one to be very helpful. Someone to do household or yard chores can free you up to do the caregiving that you may prefer to do personally.

• 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.

Once you have more help, you will find that you are doing a better job at those things that only you can do: providing your loved one's emotional support, managing the many aspects of care--doctor's visits, physical therapy, and so on.

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.