Friday, February 5, 2016

What We Don't Talk about When We Talk about Aging

Those of us who work in caregiving or aging services or healthcare do a lot of talking. We talk about medication and money and housing and hospitals; we talk about caregiving and caregivers and schedules and finances. But the thing we don’t talk about enough is talking.

We rarely talk about how critical talking is in tackling the issue of aging with dignity. Of course we say the words; we say that seniors or people with chronic illnesses must talk to their families, and we offer brochures that tell people what to tell their kids and what
children should ask parents. We remind caregivers to speak up and ask for what they need.  But then we quickly move on to other topics because, we too, are uncomfortable with talking.

Many of us have suggested that families use holiday gatherings to start the conversations about things like living wills and how they want to live later.  But we forget to mention how many times you have to try to have that conversation before it “takes.”

Talking is where those of us who work with an aging or ill population fail. Despite the many fall prevention workshops, we who work in aging are falling down on the job because we are just not talking enough about talking.

What I am talking about is talking about feelings---messy and uncomfortable feelings. The realm of emotions is gray and most of us prefer black and white. We’d rather talk about aging protocols and best practices and we can get very worked up about Medicaid and nursing homes, but we regularly avoid the one thing that will make the biggest difference in the dignity of someone’s life: Talking and listening and then talking some more.

“Aging in Place” is the buzzword. At a recent workshop I listened to a panel discuss the services available, the options for money and housing and caregiving help. But the sad truth is that none of those strategies are viable unless spouses and parents and children are talking about this hard stuff frankly, directly, and repeatedly.

The bottom-line of aging in place is this: You must talk to the point—and well past the point—of being rude, boring and annoying. And that is not easy for a family member to do unless staff and coaches and navigators back them every step-- and every word-- of the way. 

Denial, as they say in Twelve-step recovery, is not a river in Egypt. It is the central issue in illness and aging. We’re Americans; denial about aging and death is built into us. We need to be frank about this: The only healthcare fact you need to know and that all research confirms is this: You will age; you will then become less able and then you will die.  Given that, who do you need to talk to?

These conversations are not easy or comfortable, but if you want to have a say on the last years of your life then start talking about that now. There is no time for family planning in the middle of a crisis. 

Here is what I learned from years of being a family care giver: You think you’ll get some kind of warning; you think aging will happen gradually kind of like the way your hair goes gray, a little at a time.

But no. It’s very fast. One phone call, one bit of blood, one screech of the tires, one slow motion slide as your foot goes the wrong way on a scatter rug. Your life-- and the life of every family member around you-- is rapidly and drastically rearranged. Yep, you meant to talk about healthcare proxies and end of life measures and where you would like to live if you ever got disabled. But…
The family chat must happen long before you meet your discharge planner—and since we don’t know when that is going to be: You have to talk now. Discharge planners are amazing professionals. Their job is hard logistically and emotionally, but they can’t facilitate the conversations that we should all be having now with our family and our friends.   

Those of us who work in healthcare and human services are at fault too. We keep talking about making houses aging-friendly and “patient navigation”. But no one will ever get the benefit of those if they don’t first talk and talk and talk to their family. 

Shame on us for not insisting that every person with a serious diagnosis have those talks.  Anyone who works in healthcare and human services should be saying, “Did you talk to your kids?” when they get a call from a senior, and “Have you sat down with your parents?” every time we get a call from an adult child asking about services. And we should not accept excuses like, “I can’t talk to my parents about their money.” Yes, you can or you’ll be talking about it with a complete stranger in the cramped office of the nursing home you didn’t pick, and don’t like. 

One more big thing we need to say is, “Never say never.” At some point a family member will be your caregiver.  Start talking now about who that might be and how you can make this work best for them. If you are lucky and you plan ahead you can have a say in this, otherwise no. Don’t waste time joking or disagreeing. Who will it be? 

If you had to choose which of your children you’d prefer to live with be sure to talk about that now while everyone is calm and has time to think about it and then come back and talk some more. Married children need to talk to their spouses and their kids and even their in-laws.  It can take several conversations to get through all those layers.  If there are siblings there will be sibling issues. They don’t go away because we get older. And even the best families have to tread this tricky terrain.

At the end of the day—or the end of your life --the issue is not nursing homes or retirement communities—but what you didn’t talk about. And that is where dignity will live or die.

It’s not the ramps and rails that will derail a family; it is the emotional issues we would-- literally --rather die than talk about.

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