This summer at a caregiving event, a man wanted to know if it would be better for his mother, who has Alzheimer’s, to live at home with family or to live in a facility.
He asked me, “What’s the right thing to do?”
More recently, a woman worn out from caring for her husband with Parkinson’s and considering whether they should move to a facility said, “You know what I want. I just want to know the right thing to do.”
This is the conversation I have with caregivers all the time. There are so many decisions to make, from small things like what kinds of food your parent should eat, to the big stuff like whether to take away the car keys, where your parent should live, what kind of medical treatment is best or whether some recommended surgical procedure is a good idea.
And while it’s hard to make any important decision, making it for someone else, especially someone you love, when the stakes are high – sometimes life or death – well that’s quite a bit harder. Toss all of this together with possible sibling disagreements and it adds up to torture.
So what do you do? Here are six tips to help you cope, plus a link to a handy downloadable for you to keep.
Recognize There’s No Perfect Decision
Sadly, there are only less bad decisions. Disability, chronic illness, and frailty are increasingly part of our human experience as medicine keeps us all alive longer than ever before. So stop putting pressure on yourself to make the magical decision that will fix the unfixable. Because there isn’t one.
Do the Research
The answer to “What’s the right decision?” is always, “It depends.”
All things considered, the best option is the one that sucks the least. Considerations you have to weigh include money, time, patience and safety, not to mention your own health and well-being. The answer to the man whose wants to know the right place to care for his mother is a compilation of answers to a lot of questions: Are there are good facilities in his mother’s community? What kind of at-home care can she get? Is the family ready for that commitment? What can she afford?
This is where you need to do research and consider getting professional help. For example, one of our San Diego Daughterhood Circle Leaders, Karen Van Dyke, is a certified senior care advisor who specializes in helping families in her community navigate assisted living selection. She and others like her (now represented by a new national organization called, The National Placement and Referral Alliance) are experts on the options in their communities and how to match families with them. Karen stresses that it’s important to take your time and do your research. When you’re evaluating any type of facility or agency, talk to people who live there or get services from them. Interview people in charge. Ask a lot of questions!
For more on where to go to get help check out: “A Daughter’s Guide to Hiring the Right Aging Care Professional.”
The same advice goes for medical decisions too. Don’t assume one doctor’s recommendation is the only option. Take time to do internet research, talk to peers and friends and consult more than one medical professional. IMPORTANT! Doctors and nurses are on the decision team but their views don’t hold any more weight than yours or your loved ones.
Figure Out What’s Most Important
It helps to take into account the constellations of “most important” goals among the members of your family. As you’re weighing options, particularly medical treatment options, ask yourself and everyone in your family – especially the person for whom you’re providing care — to come up with the one or two outcomes that are most important. Then you can weigh the care options against these goals to see what’s the best match.
One patient told Dr. Atul Gawande that he’d be okay with any treatment that allowed him to continue watching football and eating ice cream. These are awesome goals! And, they are perfectly legitimate in deciding whether to go forward with surgery or other life-saving-at-any-costs treatment that could very likely lead to a “prolonged and dismal” death in the ICU.
Make Your Village
You do NOT have to make every decision all by yourself. The best “not great” decision you can make is the one that pulls from every corner of your galaxy. There’s a lot of information out there. You’ve got the internet, you’ve got doctors and nurses, friends and peers. Hopefully more and more of you will have your Daughterhood Circle! Soak it all up, match it up to the goals, and you’ll have the basics of the best “not great” decision you can make. This process also helps you step away from your emotions and get clarity through objective analysis.
Siblings = Crazy
I don’t think much more needs to be said here. I’ve got no advice. Except maybe to just try and stay out of jail. And if it makes you feel any better, sibling conflict is the top, number one, most painful, horrifying part of the whole caregiving experience according to literally everyone I talk to. Everyone. The only thing worse is watching your loved one suffer and not being able to make it better – that wins the gold medal for heartache with siblings coming in a close second for the silver.
If this isn’t your pain, we’re happy for you but please don’t tell us about it.
Don’t Expect to Feel Great About Your Decision
Making a hard decision is like setting boundaries. You have to do it but it will never feel great. But what a relief it is to know so you can set your expectations accordingly. Recognize that you did the best you could. At the end of the day, it’s all about expectations: don’t overdo it. Just hang in there.
And now, download here the one-page Daughterhood Mantras for Making Hard Decisions and put it on your fridge. When you look at it, imagine that we’re all having a cup of tea or a glass of wine together and know you’re not alone.
p.s. Big shout out and thank you to my colleagues at the Caregiver Action Network who let me tag along on their trips to Little Rock, AR and Fort Wayne, IN and participate in caregiver trainings on using comparative effectiveness research in decision making. Much of what I learned from them and the amazing caregivers I had the privilege to meet is reflected in this blog. Thanks to their funder, PCORI, for making a difference.