2019 ILBDC: Caregiver Empowerment, Pt. 4

By the time you've been a care partner for even a few months, you've gained a pool of valuable information and insights. Such on-the-job training is every bit as valuable as a college education in its own way. It can be very rewarding to pass this hard-earned education on. We all feel better when we can give and share.

Caregiving isn't any different. True, you give a lot to your loved one, but sharing your attention and experience with other caregivers and with the community at large can be extremely rewarding. Some of the many ways you can do this are to:

• Share LBDA materials with all of your healthcare providers
• Raise awareness about LBD among your personal network or in your community at large.
• Be a listening ear to other caregivers in both online and local support groups.

Many care partners continue volunteering and teaching about LBD long after their loved one has passed on. Jim is in his 16th year after Annie passed away. The group facilitator of our local support group is in her 4th post care partner year. Angela's father passed away a while back (I'm not sure when.) I could go on, but you get the idea. Your work with LBD doesn't have to stop when your caregiving job ends. You can keep on being involved as long as you want to. But only if you want to. Some care partners don't and that' OK too.

In summary, a caregiver has many hats: Bookkeeper, housekeeper, chauffer, personal shopper, social secretary, medical care coordinator, and more. Often these jobs are new and not all that comfortable. Your loved one may have been the one responsible financial record keeping and probably for their own medical care. But now these jobs are yours, along with others such as educator and advocate. How do you do it all? How do you do it all and still have time for you? Anglea says you are more likely to be able to make this happen if you:

• Preparing in advance
• Using outside resources
• Developing your skills
• Taking care of yourself and
• Leveraging your experiences.

Each the above four pillars of caregiving empowerment are covered more thoroughly in this and the previous 3 blogs. If you utilize them, you will find your path smoother, you will be more relaxed and your loved one will be more content.

About Angela Taylor. Angela followed Jim as the LBDA board president. When her term was over, she joined their staff and is now their Director of Programs. A member of the sandwich generation, Angela was also a wife and mother while caring for her father who had LBD.

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.