My sisters have been in town helping me clean-out my mom’s house. She never threw anything away, so she has three houses worth of stuff under her roof. It is ridiculous.
During our time together, my sisters and I were kind of reminiscing over the journey with mom, childhood, and how we got to where we are today.
Here’s the short list of what we wish we could have told earlier versions of ourselves:
You can’t control or prevent clinical episodes. This is someone else’s heavy lifting – not yours. There is no amount of medication, no amount of therapy that will be able to completely control or eliminate the risk of a clinical episode. Therapy and medication are like breaker walls next to the ocean. They can help protect the shoreline, but if a hurricane comes, there is nothing that will hold it back. Just hold tight, find a safe place, and shelter. It will end.
When someone starts screaming, stop the conversation. Walk away.
You owe no obligation to take phone calls from “interested parties.” Unless folks are on-the-ground and helping, they can bugger-off, and you have every right to tell them that.
Anti-psychotic medication versus being un-medicated is a Sophie’s Choice. There is no question these medications can improve day-to-day quality of life, but the long-term side effects are not pleasant. If your loved one doesn’t want to take them, you need to honor that, let them make the decision that’s right for them.
Set boundaries. Big, bright ones, maintain them.
Finding a good social worker can change everything. Seek out social workers who have been in the field for 20-30 years. Ask what they would do if this was their loved one. How would they handle it?
Go to therapy – for yourself.
Find time to laugh.
Turning off ring-tones or taking a break is fine. To the extent anything happens while you are taking a break, it isn’t on you.
Write down your experiences. It helps a lot after the fact. Sometimes the truth is too strange to believe later – or if someone is gas-lighting you, a written record of your experience will keep you from doubting your own reality.
Don’t take on too much.
You have a life outside of caring for your loved one. Maintain it.
Meet the doctors who are providing routine care for your loved one. They should know your face. Meet the rest of the care team, including pharmacists – having good relationships with these folks can really help you out later.
The sad reality is these episodes truly are like hurricanes, for everyone, including the patient. To the extent you are going to engage, toughen up buttercup, it can get nasty. And to the extent you do make that choice to engage, you can’t hold a grudge for anything that is said or done while the person is in an episode – do your best to let go and move on. Maintain compassion for the person having the experience, it isn’t a choice.
Make sure you have the legal stuff in order. Go meet with an attorney and pay the hourly rate to get educated on the law. Don’t wait until you are in a crisis.
There is no magic potion, no magic bullet. This situation will never be “fixed.” It is managing expectations, care, and doing your best to keep everyone healthy. That’s all you can do.