Being Prepared
Crisis happens. The best approach is to be prepared and have the tools you need to help get your loved one and family through those times.
As a starting place, you may want to download and print Circle of Care: A Guidebook for Mental Health Caregivers: https://www.caregiving.org/wp-content/uploads/2020/05/CircleOfCareReport_0318_FINAL.pdf
and
Navigating a Mental Health Crisis guide: https://www.nami.org/Support-Education/Publications-Reports/Guides/Navigating-a-Mental-Health-Crisis. The guide outlines what can contribute to a crisis, warning signs that a crisis is emerging, strategies to help de-escalate a crisis and available resources.
You may find it helpful to download and print NAMI’s Portable Treatment Record to help organize this information (https://www.nami.org/NAMI/media/NAMI-Media/Infographics/crisis%20guide/Portable-Treatment-Record.docx)
Keeping Records
It is important to keep detailed records. Information is very important if you have to give a medical or psychiatric history, or if you need to file a complaint. This record may be informal, kept in a spiral binder, notebook or on your computer:
- Names, phone numbers and dates seen of all doctors, therapists, and other medical providers;
- Dates of hospital admission and discharge;
- Medications (name, dosage, frequency, length of time taken, prescribing doctor, reactions to specific medications and side effects, if any);
- Medical history (include all conditions, surgeries, allergies);
- Dates of suicide attempts or self-harm;
- Symptoms commonly seen when the person begins to deteriorate;
- History of leaving a hospital without a formal discharge, if any;
- Arrests or court involvements that were the result of the mental illness;
- Names, addresses and phone numbers of people you may need to contact.
Keeping a simple medical diary about your loved one’s illness, with entries about once a month or as often as needed, can really help a prescriber or other treatment professional. Entries should describe changes in medication over time, and your perception of their effects (good or bad). Avoid too much detail, just summarize. Your entries should also list:
- Significant events, good or bad, such as legal problems or hospitalization, missed appointments
- All medication taken, medical or psychiatric as well as over-the-counter
- Any known substance abuse or use or abuse to “self-medicate” or manage symptoms
- Two symptoms (rated 0 to 10, with 10 being the worst) you think it important to monitor; e.g., hearing voices, ongoing level of anger or anxiety, etc.
- Two behaviors you feel are important to measure functioning; e.g., violent outburst, days not gotten out of bed
Keep describing the same symptoms and behaviors with each entry.
Example:
July 2020
A.) Started seeing new prescriber
B.) Taking Haldol 10 mg at night. Non psych medications: glyburide for diabetes.
C.) Using marijuana, amount unknown (or daily, weekends, etc.)
D.) Hallucinations (severity 6) and is paranoid (severity 7)
E.) Doesn’t want to talk or go out of his apartment much.
You may find it helpful to download and print
- NAMI’s Portable Treatment Record to help organize this information (https://www.nami.org/NAMI/media/NAMI-Media/Infographics/crisis%20guide/Portable-Treatment-Record.docx)
Advanced Crisis Planning
It is recommended that an individual with a serious mental illness, during a period of stability, discuss with their provider and support partners a crisis plan that can be activated during an acute episode of illness. The crisis plan may include:
Psychiatric Advance Directive (PAD) is a legal document written by a currently competent person who lives with a mental illness. A PAD allows a person to be prepared if a mental health crisis prevents them from being able to make decisions. A PAD describes treatment preferences, or names a person to make treatment decisions, should the person with a mental health condition be unable to make decisions. https://www.nami.org/Advocacy/Policy-Priorities/Improve-Care/Psychiatric-Advance-Directives-(PAD). For more information, visit the National Resource Center on Psychiatric Advance Directives. www.nrc-pad.org/
HIPAA Form (Health Information Portability and Accountability Act)
At times, especially when you are caring for your loved one, It is very helpful to have their permission to speak with your health care providers and access some or all of their medical information. If your loved one is reluctant to sign a waiver, point out that they may give permission for only some of their information, and for a limited time. For example, a person may to their caregiver to access only mental health information, for only a designated time, e.g., for discharge planning. Fillable form at http://www.nycourts.gov/forms/hipaa_fillable.pdf
A general Health Care Proxy which gives a designated person permission to make health decisions on behalf of a person. Although New York does not currently have a specific statute for a PAD, you can learn more about general advance directives for health care in New York State at www.health.ny.gov/professionals/patients/healthcare_proxy
Wellness Recovery Action Plan (WRAP) Another proactive approach a family might find helpful is to have a plan for overall care and suggestions on how to avoid a crisis. See www.mentalhealthrecovery.com for more details and a form that you can use to create your own WRAP.
Being as prepared as possible with good planning can ease some of the stress of coping.
