2019 ILBDC: Caregiver Empowerment, Pt.3

This is the third in a series called The Four Pillars of Caregiver Empowerment, presented at the 2019 International LBD Conference in Las Vegas by Angela Taylor. The first pillar was about thinking ahead. The second was about using your resources and developing your skills. This week's blog is about a subject that many care partners neglect to do, caring for yourself. Yet, it is probably the most important task you have. YOU are your most important caregiving tool, and your loved one's most needed person.

Start by considering your obligations. Besides being a care partner, what else is there? Do you have a spouse or children that need your attention too? Do you have a regular job, or volunteering responsibilities? And what about your house? Who does the housekeeping, cooking, gardening, etc., etc.? Write it all down. Don't worry about whether you can do it all right now. For now, you just need to see what it is that you feel responsible for.

Make room for you. Now make up FOUR (4) to-do lists as follows:

• For me to do. On it write down all the things you normally do, or think you should be doing. (Warning: This list is likely going to be far too long! Far more than you can do each day. Don't worry. You can shorten it later.)
• For others to do: Start out by writing down all the jobs that others already do. Are there any crossovers? For example, does your daughter shop for you sometimes? Now go back to your "for me" list and find more jobs that others could do. Don't worry about who. Just make a list of things others could do for you, like vacuuming the floor or doing the dishes or shopping or...well, you get the idea. Don't forget to add "sitting with loved one while I go play." This is the list you refer to when someone asks you if they can help. You can even print some out and hand one to the asker, with a "Thanks so much. Here are some ideas."
• For me to do for myself. Write down all you can think of. This may take more effort because you aren't used to thinking about this--and because you are afraid there won't be time and so why plan on it? Don't worry. Just write them down. Now when you have some time--like when someone offers to sit with your loved one or do your dishes, you can refer to YOUR list and find an activity that will refresh you. Don't forget to add "naps!"
• Not to do at all. Look over your "for me" list again. What is there that just really doesn't have to be done? Be ruthless. Cut out all you can! And cut down too. Instead of washing dishes after every meal, consider every day, or even less often, for example.

Join the LBD community. As the disease progresses, you will find that you have less in common with old friends, and even family. But with fellow caregivers, especially fellow LBD caregivers, you will find empathetic ears, a safe place to vent and practical caregiving tips. You may also find new friends.

Manage your own health. This could be a whole single blog in itself--but I doubt there is much here you haven't heard. Nevertheless, how much of it do you do? It is all important. Remember if you don't maintain your physical and emotional health, your body is likely to rebel and you won't have any choice--you will be the one being cared for and who knows what will happen to your loved one.

Work to eat healthy, have regular physical exercise, get enough sleep and fluids, make time for socializing and more for just being quiet, and finally see your doctor when you need to and re-fill your prescriptions.

Next week's blog will be the final one in this series.

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.