aging at home

What happens when you can't speak for yourself?

It went like this..

me: "hey dad, thanks for having us over for dinner"

my dad: "just putting it out there for you, I'd like to be buried (...) and here (...) is where all the documents you may need are. What can I get you to drink?"

at another time with my mother..

me: "hey mom, glad the kids and I got a chance to come visit"

my mother: "good thing you're here. I just had copies of our wills made for you and your brother to have just in case."

This may not be normal dinner conversation for most families. I credit the openness in talking about death and planning to having a mother that has been a nurse for 40+ years. People are going to get sick and some may not make it through that illness. It may not even need to be that black or white. What if you went into the hospital and were unable to make decisions for yourself regarding your care? Who would you want to step in for you and do they truly know what you are OK, and more importantly, not OK with when it comes to medical intervention?

Before my daughter was born my husband and I took a series of "baby classes," ones that talked about labor and delivery, caring for a newborn, etc. The class that I was most interested was the c-section class. Purely because I knew relatively nothing about that procedure other than it resulted in a newborn baby. In that class they talked about different types of medications during labor and their relative effectiveness. During this class my husband leaned over and asked "do you want any of this stuff?"

I had no idea.

I was well on my way with this pregnancy and knew that I was going to deliver in a hospital, but hadn't thought about all the options or possibilities and what I was on board with. A few long months later- after a night and most of the day in labor, I literally could not make the decision for myself regarding medications. I remember mid contraction the midwife talking to my husband and asking him questions but I couldn't concentrate on what they were saying. Long story short- I woke up an hour later from a nap, with a clear head and the ability to continue (I did believe for a moment that I had somehow lucked into a 1950's birth and they just knocked me out and she was born... no such luck). That birthing class turned out to be invaluable. It sparked the conversation about what I wanted for myself at a time when I was able to clearly consider my options and decide what worked for me. It also created an opportunity for me to discuss these decisions with the person that was going to step in and make them. 

So what do newborn babies have to do with end of life planning? Lots, actually. Nothing helps address the elephant in the room (ie. mortality) like a new baby. It creates another link in the chain of generations, a glaring reminder that time is passing. You may have no idea what you're comfortable with medically in case of an emergency or you may know exactly where the line in the sand is. 

That's step one.

Step two, usually the hardest one- you have to tell someone.

Specifically, the person you want to step into that role should you need them to. We don't like to talk about these things because they are scary and overwhelming. Consider the alternative though- your family standing outside the hospital room trying to figure out what's right for you. Think about the burden of that position. What if you had four kids and they all thought they were doing what's best for you? These choices have a lasting impact on families, regardless of the outcome.  

These conversations don't have to be stiff and formal, sitting around a table at a lawyer's office. If you are not the type to discuss this consider writing a letter with your wishes in it. Tell the person who may need it where it is. Or better yet, go one step further and use an online template to create a will, sign it, and keep it in a safe place. 

While you have the time and ability to make these decisions for yourself- do it. Take the burden off your loved ones. 

"What if".... the silent killer

How many major decisions- which college to attend, beginning or ending a relationship, taking a new job, moving to a new city- have you looked back at and thought "what if I made the other choice?"

Take that feeling and think about what it would mean to make a major decision on someone else's behalf. Should your parent go home? Can your spouse be home alone during the day while you're at work? Does your grandmother need to move to an assisted living facility? 

Ick. 

Decisions made with (or for) a loved one are packed full of guilt. Did you make the right choice? Did you get all the information about what the discharge plan was going to mean for them? For you? Will they be safe?

In a time of google, WebMD, and numerous chat sites, it seems as though the internet has the answer. If you search for "is my parent safe to stay home" the results include tips for talking with your parents not about staying in their home, signs it's time to move to assisted living, and the dangers of leaving parents home alone. These websites do not inspire a lot of confidence, maybe rightfully so, but every house is different and every person is different. There is no formula to be applied or googled to let you know that the right choice has been made. This is why home assessments used to be a more prominent component of discharge planning for patients while in acute rehab. 

As you (or your loved one) progresses through a hospitalization they will inevitably come to this fork in the road- home or not. So now that a home evaluation by the hospital therapist is a less likely option, how can therapists gather information to inform their recommendation? In the hospital therapists ask family members to take measurements of areas in their home- height of furniture, bathroom dimensions, stair height, to try and piece together information. This could work for a simple question (can they get in or out of the house for example), not the “whole person” approach to deciding whether or not someone can continue to stay in their home or how best to adapt it.

Going through a home with a trained therapist yields much more information, how that person moves in their own space, what tricks they've been using to get by if their health has declined, how to adapt areas in their home to suit them. Living in New England and going in and out of dozens of homes has honed my troubleshooting skills when it comes to making a 100+ year old house work for clients.  

My goal as an acute rehab therapist was to get as many people home as safely possible. Home Field Advantage is an extension of that goal in a collaborative model with clients and family. Not every person will end up at home though. It is my hope for these individuals and their families to not have these lingering "what if" feelings. If you are unsure if you or your loved one will be safe in your home, I would like to help. To make an informed decision, one that you can be at peace with, knowing you’ve considered all options, you need all sides to the story. If home is no longer an option following an illness or injury helping a family know that they made the right choice, is paramount to the discharge location. 

If you are struggling with whether your loved one can return home after a hospitalization, or ways to troubleshoot their safety and function at home, I would love the opportunity to help.