Jim's recent experiences with hospital and ER visits spurred me to blog about what to expect. This week, the blog is about being an educator, something about which the average LBD caregiver is usually well aware.
Expect to be an educator about your loved one's disorder. Do not assume that ER or even hospital personnel knows about LBD or about its issues with drug sensitivities. This is especially critical when your loved one is there with something unrelated to LBD.
• Bring short, easy to read articles about LBD that discuss its most common symptoms, such as drug sensitivities, fluctuating cognition, early hallucinations, and active dreams and how it differs from Alzheimer's. The LBDA website offers many such articles.
• Bring a LBDA Medical Alert Wallet Card and ask that a copy of it be added to your loved one's chart. Click here to order or download one.
• Bring a list of how LBD affects your loved one, including specific symptoms, most common irritants and the way she responds to them--acting-out, withdrawal, etc. Ask that this also be included in her chart.
Expect to be a full partner in your loved one's care.
• List any drug your loved one has reacted poorly to as an allergy. This should prevent them from being used.
• Provide a list of drugs that have been shown to be risky for people with your loved one's disorder. (i.e., any anticholinergic drugs for LBDers. You can find lists here.)
• Insist that no drugs be given to your loved one without you being informed first. With a power of attorney from your loved one, you have a right to refuse drugs you believe to be harmful. (Even without one, it is worth a try if you are a spouse--but get the POA! and be prepared.)
• Ask to see the chart if you are concerned. Some nurses are very helpful about letting you view these.
• Ask to see any test reports. Ask that they be printed out so you can have a copy, or that they be emailed to you. If you get them while you are there, they may be free but if you ask for them later, you will likely have to pay a fee.
• Be assertive and persistent, but always respectful. Assume the staff is doing their best to care for your loved one--but don't accept brushoffs.
Expect the staff to be busy but interested. Most staff are interested in anything that will advance their pool of knowledge.
• The more interesting you can make your "spiel" the easier it will be to get people to pay attention. Share your passion with them!
• Be friendly and willing to talk but not pushy. (The honey vs. vinegar thing.)
• Don't be a know-it-all, but do show that you have done your homework and know what you are talking about.
• Have your literature available so you can use it to support what you say...and to hand out for staff to read when they have more time.
Expect that the staff has to--and should--abide by hospital rules and doctor's orders. What you teach may not change the way they do things now. This has to come from higher up. But the more you educate, the higher up it will go! But what you can do is make sure your loved one gets the best, most well informed care possible. And that is your immediate goal anyway.
For information about Lewy body disorders, read our books:
A Caregivers’ Guide to Lewy Body Dementia
Managing Cognitive Issues in Parkinson’s & Lewy Body Dementia
Helen and James Whitworth are not doctors. As informed caregivers, they share the information here for educational purposes only. It should never be used instead of a physician's advice.