New Directions' Supporters Checklist and WorryList

Written by Laurel Hoffmann of New Directions.

You cannot take care of anyone else unless you first take care of yourself. In extreme cases, if you are at risk you must take whatever precautionary steps are needed for your safety. For your support to be effective, you cannot live in fear.

GENERAL INFORMATION

1. Discuss the illness with the loved one. Ask him or her for help in determining how to make things easier. He knows his illness better than anyone else, including the professionals.

2. To help with compliance, put the medicines in trays, sold at drug stores. Color code: Use a clear or white box for AM, a dark box for PM.

3. If the loved one is agreeable, go in with him or her periodically when he sees his professionals. This is especially important on the first visit. When a person is severely ill, it’s also advisable. A diagnosed person may be very nervous during an appointment, and later be unable to remember what the professional may have said. Or he may not completely understand the instructions. It can also be helpful for the professional to have the supporter there as a source of additional, clarifying information. In very sad situations the patient, on his own, may not recognize professional incompetence.

4. Consider writing a history with the patient’s help. Include all medications the patient has taken and is currently taking. This helps both patient and doctor and you, their advocate.

5. If the professional doesn’t return phone calls within a reasonable time frame, consider finding another professional.

6. Many people with or without a mental illness are affected by light. A diagnosed person may become depressed during the fading light of autumn and darkness of winter. The loved one should sleep in the dark to foster production of the mind’s sleep chemicals such as melatonin. During the day they should soak up as much light as possible – blinds up, curtains open.

7. Many diagnosed people are eligible for Medical Assistance and Social Security. Young adults may receive more if still in their twenties, as theirs may be rated on their father’s income. Check it out.

8. That said, do encourage your loved one to participate fully in society as much as possible. Their psychiatrist and therapist should also do the same. People with mental illness are capable of meaningful work and should not be patronized or infantilized by professionals no matter what their diagnosis. Even if on disability, your loved one can still work a certain amount of hours or do volunteer work or take courses. Everyone wants to be a productive member of society.

9. Give the loved one reason to want to live. Praise anything genuine that the loved one does. We all benefit from praise. With support many loved ones can achieve full lives. Others can live fuller, more meaningful lives. Your support makes the difference.

10. Consider taking (1) the 12-week Family-to-Family NAMI education program and/or (2) Edie Mannion's Classes listed on the TEC Family Education website of the Mental Health Assn. Continue to attend New Directions Supporters meetings. See NAMI.org to find the nearest NAMI office.


CRISIS: PREVENTION, INTERVENTION

1. Initial prescribed medications may not work well, and often a series of medicines will be selected by trial and error until the right one or combination of meds are found. It’s not unusual for a patient to take an average of 3-4 meds for mood stabilization.

2. Be aware that drinking alcohol renders the meds ineffective. Your loved one should not drink except on very special occasions.

3. Get confidentiality forms signed when the loved one is stable, so as to have access to information from the professionals when the loved one is in crisis. Having confidentiality forms signed also helps with access to insurance information, making it easier to get financial problems straightened out.

4. For the severely ill loved one, consider getting a power of attorney, a durable power of attorney, and a health directive.

5. Sleep deprivation is often the first sign of an impending breakdown. But even when compliant and with no symptoms, a breakdown may not be preventable. That’s the nature of these cyclical illnesses.

6. If there is a crisis, it’s okay call the local police. Ask for an ambulance. Tell them the person in crisis has a mental illness. Plan ahead. Know where your loved one, in crisis, will receive the best treatment. Familiarize yourself with the best mental hospitals in the area. Ask the Supporters about this.

7. In crisis speak calmly, softly, and slowly so as to prevent upsetting the loved one. Do not get into a car with someone who is manic.

8. What a diagnosed person says in crisis may be very painful to hear. Try to let it go. Remember: it’s the disease talking.

9. Make sure YOU have support. Many supporters get their own counselors.

10. Your Supporters' Group is now led by Murray Weismer. Contact him at Murray@weismer.com or 215-934-7459.

SUICIDE PREVENTION

1. Because the disease is so difficult to bear, people with a diagnosed mental illness are at high risk for suicide. Ask the loved one if he is thinking of suicide. He will probably tell you. If so talk with him about how horrific this would be for all involved. Make sure he understands the impact this would cause for all. If in fact suicide is attempted, remember: it is the fault of the disease, no matter what the suicide note may say.

2. Teens tend to be impulsive. Impulsivity is a symptom of mental illness. That is why teens are especially vulnerable for suicide.

3. Make it clear that you care. People with a diagnosis know they present many problems. They are easily convinced everyone would be better off without them. Find a way to genuinely praise the person every single day, both saying “I love you” and showing it in innumerable ways.

4. Do not keep guns or weapons in the house.

5. Not everyone is equipped to be a good supporter but you can learn and you can do it! You and all supporters are VERY SPECIAL PEOPLE. We did not ask for this role in life but we do it out of the goodness of our hearts.

WORRY LIST

SUPPORTERS PROBLEMS & WORRIES

Worries:

1. Worry that the loved one will relapse.

2. Worry about money to pay if there is a relapse.

3. Expectations are now lower – disappointment.

4. Worry about finances in general.

5. Siblings worry that they might get it.

6. Concern or fear that the diagnosed member will become angry with, and blame the caretaker. No matter what, it is not your fault your loved one is ill.

7. Family concerned that another member may go off the deep-end next.

8. Loved one may be concerned that family might put her in a home.

9. Hard for the family or principal caretaker to help loved one emotionally.

10.Sibling may be concerned that he will become the caregiver.

11.Primary caretaker may worry that financial support and repeated bailing out of the diagnosed member may become a serious drain on caretaker’s own finances and limited energies.

PROBLEMS:

1. Loss of extended family who don’t want their children with the diagnosed family member.

2. Reactions of other parent – Non-supportive in some situations.

3. Overload with dealing with mental illness of loved one.

4. Diagnosed member blaming the mother.

5. Self-destruction aspect: e.g. Drinking, car accident

6. Shocking or humiliating aspects of diagnosed child’s behavior

7. The diagnosed person’s appraisal of her situation as compared with a healthy sibling or friend. Feeling left out of normal joys of life because of illness.

8. Emotional problems of diagnosed loved one.

9. Difficulty lowering the bar of expectations.

10. Depression of diagnosed family member with what he didn’t get or didn’t do in his life.

11. Need to be there for the others.

12. Other parent’s worries.

13. Physical stress from taking care of diagnosed members.

14. Various family members adversely affected.

15. Loss for the diagnosed

16. Having to repeatedly bail out their diagnosed family member in numerous situations including from jail, in money matters, at mental hospital, in making bad decisions.

ACTIVITIES THAT HELP:

1. Need a life of one’s own.

2. Helping others helps you.

3. Getting out with friends. Having confidence to leave the loved one home alone when it is safe to do so. Never leave home if a loved one is acutely suicidal. This is when they 'try it.'

4. Getting the house into reasonable condition.

5. Interaction with others in same situation – finding out that others are in worse situations.

6. Taking charge of situations to protect other family members.

7. Staying close with family members who are supportive.

8. Helping others in worse situations.

9. Work

10.Get involved outside the home.

11. Murray says: Have loved one take at least 4 grams of good quality fish oil. Very recent research shows significant benefits for both Depression and Bipolar. Many psychiatrist now suggest it.(Disclaimer: Check with your doctor before adding any supplements.)

REAL ADVICE:

1. Lower your expectations
2. Look for something worse.
3. Get a good disability lawyer early on and find out about social security.
4. No denial.
5. If your loved one is a drug addict let them know this is unacceptable. Attend Nar-Anon meetings for families of substance abusers.
6. Maintain a positive attitude which hopefully will rub off on the loved one.