2019 ILBD: Caregiver Empowerment, Pt. 2

Last week, we started a series about Angela Taylor's Four Pillars of Caregiver Empowerment. This week we move on to her Pillar 2. You, personally, have a lot more resources than you may be aware of.

You are the expert. As the care partner of someone living with LBD, you become the expert. That's true even if you weren't that close before you became their caregiver. When I became my much older sister's caregiver, I knew very little about her. We'd actually never even lived in the same town, let alone the same house. But before long, I was an expert on her needs. I had to be to do my job well. You get to know how they relate to family. You know their level of education and as time goes on, you learn what they can understand and what they can't. What they can do and can no longer do. You know their hobbies and interests, those activities that can help them still feel like the person they used to be. You know their personal preferences and idiosyncrasies, those little things that can make life miserable or happy.

Try empathy first. However, as the disease progresses and your loved one's ability to communicate diminishes, understanding their wants and needs can often be frustrating. Step back and think about what you might want if you were feeling and thinking the things your loved one is. What's going on? Are they frustrated by things they can't do anymore. Speak to the underlying feeling. Are they experiencing hallucinations or delusions? Empathy will put you in their reality, where you can relate with them rather than expecting them to relate with you in your reality--a set up for disaster! Are they confused or anxious? Try empathy laced with patience, to help them calm down. Are they depressed or apathetic? Both are LBD symptoms, all of which get worse with stress and better with relaxation.

Be realistic. Schedules, routines and rituals are a caregiver's best friends. They help your loved one feel more in control of their life. But when you set them up, take into consideration how much longer everything takes now, and how much more energy it takes as well. Be alert for tiredness and low energy levels and curtail activities if necessary. Adequate sleep is extremely important. As time goes on a person living with LBD will sleep more and more. This is normal. But so are night time wakings because their time clock doesn't work well anymore. Do your best to keep these minimal--mainly for your own need for sleep, but be realistic about their presence. It may make more sense to have someone stay at least some nights every week so you can get some sleep. Finally, as the disease progresses, personal hygiene will become less and less important to your loved one. Insist on enough to keep him acceptable and safe and let the rest go.

Find community resources.If you are fortunate, you have family members who can help you. But even then, you need to know about the resources that are available in your community. The list is long and you should start researching these well before you need them. Remember it is much easier to make informed decisions if you aren't in crisis! Check out the following: home care assistance, respite care, legal and financial services, geriatric care managers, government agencies, adult day programs and long term care choices.

Finally, don't forget about the LBDA Research Centers of Excellence. Visit www.lbda.reoe to see if there is one in your area. If so, do take advantage of what they offer:

• Experts in clinical management of LBD. You can always find a Lewy-savvy doctor here with the latest information because the centers also provide LBD education to their health professionals.
• Support groups and community education for you and the community.
• Opportunities to participate in research, which can be a gratifying experience.

Next week's blog will be Pillar3: Care for Yourself. This is a subject we talk about often, but never too often, given its importance!

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.