Our parents are getting older and every one of their body parts is getting closer to the ground. This is the reality we see and experience every time we set foot in the old house, or greet them at the airport, or see them for the first time after a hiatus. Its like some old person came and inhabited our [formerly young] parent's body.
More than 25% of American families are involved in elder or parent care. So if you are facing this situation in your own family, you have company. This happens to be my career and my life. Listen or not. Your choice. My thoughts. Here goes.
The best way to prepare yourself, family and parent? Swallow hard [I prefer putting a large dose of narcotics on my tongue before swallowing first - only kidding, guys], then open an honest conversation. Ouch. It is difficult to speak to your parents about aging. Heck, its difficult to speak to your dog about aging and they don't even understand what you're talking about.
People feel more comfortable putting the conversation off. Let's conspire not to have it at all, and maybe it won't happen (hide head under pillow here). Truth: it can come down to a matter of re-framing how you view taking this step. Conversations about how your parent wants to live as they age (not die, or decompose) are a gift to the entire family. "What cool stuff do you want to do this year? [insert decade, as appropriate]" Giving family members [or receiving from such family members] a clear understanding of someone’s wishes allows peace of mind and ensures the well being of your parent. Knowing their wishes ensures you make decisions in-line with their wishes and values. Regardless of the content of the conversation, I guarantee you that you will be glad you had it.
The documents to prepare as a parent grows older should not be considered a standard form to sign. That being said, I'll take a form over an oral expression or vague recollection of an idea. Let's start with the truth and work from there.
Ideally you put together (with or without me - your expensive lawyer) a reflection of who they are as well as the life they want and are able to have. The official name of the legal document you want here is actually called an "Advance Health Care Directive." But don't let that get in the way of your thoughts about what you could express in the document. The choices your parents make symbolize who they are; because beyond instructions for care, it reflects the type of care that supports their sense of self. You cannot write a recipe for brownies and expect that exact same recipe to work identically in everyone's kitchen, oven, altitude, home, pots and pans, and so forth. We all have different ingredients, equipment, tools and resources. The form cannot capture that any more than a standard recipe can capture a Neopolitan experience.
When beginning conversations with family (ok, parents):
Focus first on things you agree on. Realize that you are both looking out for each other’s best interest in most cases. Talk about how you can help each other.
Ask how you can help your parent maintain their independence. This is big. They don't want you in charge. They want to be in charge. They get to be in charge. Its their life and their stuff. Leading with saving you some taxes and probate fees is probably not going to inspire their trust.
Comprehensive estate planning can mean drawing up important legal directives - but don't expect me to pop out of a phone booth with a cape on to solve your lifelong communication problem with your parents. Estate planning will play a big part, sure, in helping ensure wishes are carried out, especially when their health fails. But asking them what they have done for their estate planning is an important first step in talking about larger issues of life, heart and soul.
Encourage your parent to decide on the kind of care they want - that facility [that you think is so awful] may be a lot nicer and more accomodating than your home with the 4 mangy kids, the irritable spouse and the smelly dog. They were too polite to say anything about it until you asked. . . . but . . . .
Think about some of the possible medical situations that can occur (strokes, falls - heck joke with them about that embarassing accident that could occur at any moment: "Jeez, Dad, you really got to lay off the mud-wrestling with 21 year-olds from now on"). Levity works, with the right parent.
Help them choose someone to act on their behalf if they cannot make decisions for themselves. The worst choice is none at all. You then have the pleasure of paying me a ridiculous amount of money to go ask a judge to decide what should have been a private matter in the first place.
Try to talk comfortably about their wishes. I recommend coffee and ice cream at this point. Frozen yogurt if their cholesterol is above 210.
Let them discuss how they wish to be cared for and ask them to be specific. Private room? Semi-private? Hang upside down in the closet like a bat? Really, Mama? Again, sometimes a little levity to break the ice.
Recognize that your parent is the ultimate decisionmaker and the pace of stepping in to care for them needs to support their personal wishes and needs. As smart as we are they are not our property. Try and understand each other’s values and concerns. I know, its sooo hard to listen to them for the first time in 40 years. Take a deep breath and give it a try. Pretend you are a Martian listening to them for the first time.
Ask your parent to speak in positive action language – in terms of what they want instead of what they don’t want. No one wants to die, be tied to a respirator and feeding tube, be lying on a gurney in the livingroom - I'll answer those questions for your parents right now. They don't want that. Right. Problem: I write well, but I can't fix those with a document.
Realize that as they begin to need more support from the family, the family as a whole will be affected. Arrange a family meeting at the first opportunity to discuss roles and responsibilities. Invite the "bad" siblings and so forth. Tell your little brother there's free beer. He'll be there early.
Talking about the future means attempting - often inartfully - to understand the values and concerns of the one you are caring for. Its awkward. There's no textbook. "Ask Abby" doesn't run a column on this stuff. Ultimately you must be able to apply their decisions to complex and uncertain medical/legal situations. You want to avoid a visit to the friendly neighborhood Probate Court. The ability to work this out begins with you understanding the ‘why’ behind your folks' wishes. This understanding can only come from open and honest conversation, which will be awkward 100% of the time. Try breaking the ice with a joke or two. Print out this blog entry if you want and maybe that will get them started. I promise I will not sue you for copyright infringement (unless you want to sell this to your parents, in which case my royalty is now due).
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