Seniors with Epilepsy: Finding the Right Assisted Living Facility

Finding the Right Assisted Living Facility for Epilepsy

Trish Hughes-Kreis

 

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Note: Trish is especially qualified to write on this topic. She is a full-time caregiver for a family member with Epilepsy.

Caregivers need to consider several factors when placing a loved one in an assisted living care facility.  Is it clean?  Safe?  Does the facility have numerous violations?  Is the staff friendly and happy? 

There are so many things to consider before placing our loved one in the care of another.

There are even more factors to consider when our loved one has Epilepsy. When searching for a suitable care facility for someone with epilepsy there is a bit more detective work needed. 

Best Facilities for Epilepsy – Nationwide:

Using these seven questions as a guide will help you find the assisted living facility that is the best fit for you and your loved one.

• What is the Protocol for Handling Seizures?  Approximately 3 million Americans live with epilepsy and people over 60 years of age account for 25 percent of all new cases.  Familiarity with epilepsy and how to treat different seizures is critical.  It is important to find out a facility’s seizure response protocol as it will give information as to the level of their understanding of epilepsy.  For instance, it is not always necessary to call paramedics when a seizure happens but if this is the standard procedure for a facility then that may be an indication they are not well-versed in epilepsy.  (Helpful Hint:  If you otherwise like the facility but they don’t seem very familiar with epilepsy, see if the staff and administrators are open to learning more about it.  You and your loved one could help educate the staff which not only helps your loved one receive quality care but may help others as well.)
•   How are Differing Medication Schedules Handled?  Adhering to a strict Epilepsy medication schedule is imperative for optimal seizure control.  Most facilities have designated medication dispense times but not all residents with epilepsy will fall into this cookie-cutter schedule.  Find out if, with doctor’s orders, a particular medication schedule will be followed. Once you do find a facility that is willing to follow a particular medication schedule, know that it is necessary to include in the admission documents the medication list and schedule which has been signed off by your loved one’s neurologist.  No amount of flexibility within the facility will allow a change in medication schedules without doctor’s orders.   Reviewing the schedule (which is part of the doctor’s orders) with not only the admissions director but the floor nurse is very important.  It may even be necessary for the caregiver to be present during the initial few days after admission to ensure a smooth transition and compliance with the medication schedule. (Helpful Hint: Review any deficiencies and violations of the care facility before placing your loved one. If the facility has numerous violations related to medications it may not be the best place for someone with epilepsy.)
•  How Can the Facility Help Manage Seizure Triggers?  Seizure triggers are non-negotiable.  Can light bulbs be changed if a particular room light is a potential trigger?  Ask how food triggers are handled.  If caffeine is a known seizure trigger what steps are taken to ensure caffeine is not part of the resident’s meal plan?  (Helpful Hint: List any food triggers as an allergy.  That usually ensures compliance.)
•   What is the Fall Prevention Plan?  Not all people with epilepsy are a fall risk but many definitely are.  Doctor’s orders and intake procedures are critical to reducing injury from falls and keeping your loved one safe.  One byproduct of being a fall risk is the tendency of care facilities to push for an “easy” solution.  Sometimes this means putting your perfectly mobile loved one in a wheelchair.  While this may be the easiest solution for the care staff, it is most certainly going to be detrimental to your loved one. (Helpful Hint:  A compromise may be allowing your loved one to walk on their own as much as they can but to wear a medical helmet in order to reduce head injuries if a seizure and subsequent fall happens.)
•  What are the Bathing Procedures?  A resident with poor seizure control who loses consciousness during a seizure should have assistance during bath time.   Be sure this is noted at the outset and not after the first fall. (Helpful Hint:  Suggest using a shower chair.  Sitting in the shower chair and showering is much safer than standing in the shower or bathing in a tub.) 
•  Is the Facility Willing to Keep a Seizure Log?  Keeping track of seizures is important to determine if the current level of medication is working or needs adjusting.  Since the caregiver cannot be at the care facility all the time it is the responsibility of the care staff to keep a log of any seizure activity.  When researching care facilities, a question about staff doing this can be tied to your staff/resident ratio questions.  There is little chance this will be done reliably if the care facility is short-staffed. (Helpful Hint:  Provide pre-made, blank care logs so the staff captures the information needed by the neurologist.) 
•   What are the Procedures for Resolving a Problem?  Always remember that if your loved one is not getting the quality of care that you expect, there are methods of recourse.  Generally, starting with the care facility staff and working your way up to the director can effect change.  However, it may be necessary to contact the local ombudsman or even the state’s licensing agency.  This is true for any resident issues and not only those with epilepsy.  (Helpful Hint:  The procedure for resolving issues should be included in the admissions packet.)

Epilepsy adds a bit of a complication to finding a safe and loving assisted living facility but it does not make it impossible.  Insist on quality care when doing your research as well as once your loved one is placed so you can leave the facility feeling confident your loved one will receive the best possible care – seizures or no seizures. 

Real Questions We’ve Received from Seniors and Families Looking for Assisted Living for Epilepsy:

The following  are actual messages we have received that highlight that there is a real need for appropriate care for seniors (and even younger folks) with Epilepsy.

Q: My son is 22 and has epilepsy. he is unable to care/live alone. does this location offer living to individuals like this. Marlene

Q: I am looking for a placement for my 18 year old nephew with epilepsy. He needs 24/7 care.  Your home with the 2 1/2 acres seems that it would be a great setting. He currently lives in Wayne County but my sister would like to transition him to a group home in Oakland County. Thank you! Jan

Q: My mom has Epilepsy and I am having trouble finding care that has staff knowledgeable about how to manage Seizures and Epilepsy.   Please help! – Maria

Q: I am a full-time caregiver for my sister who has Epilepsy.  She is advancing in age and I am becoming exhausted caring for her.  It’s time for her to move into a more formal care setting.  Is there such a thing as Assisted Living that specializes in Epilepsy?  Not finding much information on it.  Thank you.   – Anne

What Should You Do if you Witness Someone Having a Seizure?  

Trish’s Author Page

Additional Help and Information for Epliepsy

What Is Epilepsy?

From https://www.epilepsy.com/learn/about-epilepsy-basics/what-epilepsy

Senior Living Research Guides by State

Photo courtesy of F. Fajardo

Nationwide: