1. The diagnosis is difficult.
We don't yet diagnose mental illness with real lab or blood tests. Virtually everyone has the experience of the diagnosis changing from doctor to doctor. And many people have more than one diagnosed disorder. Dual diagnosis of mental illness and an addiction are particularly common. Up to 80 percent of the people with bipolar disorder have an alcohol/drug addiction.
2. It's hard to get help.
You face long waiting lists for psychiatrists and case managers. The rules generally are that you have to be assigned help when you leave the hospital unless, of course, you have private insurance. That can mean you are looking at waiting lists of as long as eight months. If you are in that situation, look for a psychiatrist who doesn't take insurance. You'll have to pay some money, but you'll be able to get in faster. You also can look for psychiatric nurse-practitioners to get faster help. In some cases, family doctors are comfortable prescribing medication, but often they are not, particularly for schizophrenia. If you are in an emergency situation, need to get a prescription and can't get an appointment, your only options may be a hospital emergency room or Netcare, a psychiatric emergency service. And, you're right, that's expensive and doesn't make sense.
3. One aspect of mental illness is lack of insight. And the medications do have bad side effects. So it's really challenging to get people to take their medicine.
The ill person often doesn't see himself as ill, which makes it hard to get him to stay on medication or go to therapy.When the medication has bad side effects, that's doesn't help either. One-half of people with serious mental illnesses don't take their medicine.
4. You have to find a friend who understands the system.
Make friends with social workers through Mental Health America or NAMI support groups so you can learn how the system works ... at least, for this month. These social workers, who are assigned to the groups that meet at community mental health centers, can make phone calls for you and tell you what to do.
5. This is a marathon, not a sprint.
This is going to go on for a decade or two or three. You must adjust your response and the pace at which you work so that you maintain your own strength and sanity. Do everything possible to prevent the unpredictability of the situation from making your own life disorganized and chaotic. Figure out your own limits. Find ways to bring joy into your life.
Sunday, November 18, 2012
Wednesday, November 14, 2012
To help, I'm repeating the tips from last year's holiday planning post, plus some new thoughts on being your own caregiver this Christmas.
- Accept this ain't gonna be pretty. If you can get rid of your unrealistic expectations and be honest with your loved one and all the other family members, it will go better.
- Help your loved one to keep her dignity. Provide a gift fund or another way to allow her to give gifts, so she won't feel left out if she has no money. Scan every situation that's coming up to make sure that your loved one won't get unwelcomed attention.
- Hey, it's a good excuse to keep the unofficially crazy family members away. You want a small gathering of your own family. Period. Otherwise it's too stressful for your loved one.
- Keep it short. Keep it informal. If you have to do the Big Family Thing, let your loved one stay home. Big groups are too much for your loved one, especially when you have to Put On a Happy Face. And do your own celebration.
- If any of your extended family members really want to see your loved one, they know your phone number and where you live. Something private is better. And try not to be bitter if no one asks. (There's a reason God chose you to be this person's lifeline. Not everyone can deal with this.)
- The best answer I've found to the question ... How is he? ... is "About the same." That's tough enough for you to answer. So please don't put your loved one in a situation where he or she has to answer the question.
- If you are having an event at your house, discuss it in advance with your loved one so he or she knows what to expect. Accept his limits. Accept her choices. Acknowledge his feelings.
- If the person wants to be more visible during the holiday, brainstorm some things in advance. What will he say when asked how he is? What will she do during the gathering? Is there a quiet place to retreat if needed?
- Tell the person whose home you are visiting what you may need in advance. Please don't put yourself in a position ... helping cook at someone else's home, for example ... where you can't leave with little notice. If you are stuck, have someone ... a sibling or spouse ... available to get the person home if needed.
- All your great preparation may result in your loved one refusing to participate at the last minute. And that's OK.
- If someone offers to help you with any holiday preparation, ACCEPT.
- When you make out your own Christmas wish list, see if you can ask for things that will reduce stress, whether it's a massage, a day trip, a cleaning service or a gym membership.
- Eat right. Avoid the alcohol. Sleep. And write out a list of things that you are grateful for this year.
- A nice thank you card to people who have been helpful to your loved one personally or professionally is always good.