LBD has extremely wide, gut-wrenching fluctuations – it is difficult to know if some things are a Lewy spike, or a potential coffin spike. How can you know?
Making the decision to go to a hospital emergency room (ER) is difficult, and frequently results from a worrisome change or crisis. Often, it is highly influenced by emotions. Using a baseline journal will help make a more objective decision, and will help with decisions when you are at the hospital.
Before a Crisis Hits: Consider, Plan and Discuss.
Consider the bigger picture. Think about the options and weigh the benefits of going to the ER. Consider the impact on your loved one: the potential for contracting another illness while there; how long it will take to be seen, assessed and treated; whether there is a possibility for worsening of the condition by being there; whether you can accompany them and how you will get back; and what your realistic expectations are of a cure.
Discuss and plan for likely future scenarios. Understand options and potential outcomes. For example, the success rate of resuscitating an elderly person with chronic conditions can be close to zero, and CPR and related processes can be extremely intrusive and traumatic. Would your loved one want that? Is quality of life more important than length? What happens if resuscitation is successful, but the condition is profoundly worse than before? What would you wish for if you were in their shoes?
If you think through those types of considerations, some of your decisions can be pre-made, or at least pre-weighed. You will also have had the time to investigate options and get supports in place to make either choice workable.
You will still have to make the final ER-trip decision, and this article provides two streams. One includes specific points to help make the decision. The second section explores what to do if you decide to go, what to take, what to do while your loved one is in the ER, and what to do afterwards -- whether you are discharged or not.
Do You REALLY Need to Go to The Hospital ER?First: Keep calm. Breathe. Your own agitation can magnify problem, make LO worse or less communicative.
- Weigh out the impacts vs. potential benefit of going. Avoiding the hospital can sometimes be the healthy choice.Lewy-speech and communication is often compromised – if symptom is being described, can you assess it yourself?
- Listen carefully, be open, dismiss your own preconceptions, reflect to your LO, reinterpret, repeat.
- Check for obvious possibilities first (UTI, infection, dehydration, respiration, constipation). Can you set up something with your General Practitioner to provide you with sample jars to make it simpler for you to bring in a specimen for testing, or get over-the-counter UTI tests?
- Have a list of key contact people with phone numbers that you can call to consult. Have this with you at all times (electronic or printed, both is best).
- Is there a house-call doctor option available? Telehealth? The cost may be worth it for the lowering of disruption and exposure to hospital environment.
- Have plans, and have alternates: techniques to get off the floor if fallen, someone to call in emergency to help or check on the home. Instead of 911, there may be a local, non-emergency, number you can call to have firefighters come to get a person up from the floor.
Timothy Hudson operates LewyBodyDementia.ca -- a Canadian website providing tips and techniques to make life better for LBD carers and those they care for. Information is prioritized to provide the biggest benefit, and as early as possible in the process.
For 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
Helen and James Whitworth are not doctors. (Nor is Timothy Hutton.) As informed caregivers, they share the information here for educational purposes only. It should never be used instead of a physician's advice.