There are few things more important and challenging than trying to understand and respect our aging loved one’s wishes, particularly when serious physical and mental health issues develop. So often, in our minds, their wishes conflict with what we think is needed to keep them safe and connected to others.
The most frequent and challenging conversation I have with families starts like this: “ Dad really needs help. He isn’t eating enough. He’s not taking his meds as he should and he refuses to use his walker. I’m scared he’s going to fall or his health will worsen because he won’t do what he needs to do. I want to have a caregiver visit him to help with meals and medication reminding and help him get about – but he refuses. I don’t think he is making good decisions for himself. His mind isn’t 100% and yet I cannot legally or practically make the decisions for him. What do I do?”
The real answer (and I know I risk sounding trite) is – you do the best you can and recognize that that may not be enough to solve the problems as you see them. Not very motivating is it?
My version of the best one can do is this:
- Really try to understand what they want. Do they want to live in their current home as long as possible and maybe even until the end? If not, what do they want? What wishes do they have. What gives them pleasure? Try to understand what fears or concerns they have. If you feel that they are doing things that aren’t in their best interests, ask them (non-judgementally!) why they do these things: “are you having any problems taking your meds as prescribed? I noticed you aren’t eating as much as you used to – can I help, is there something else you want to eat? You seem to use the walker at home but not when we go out – why is that?” Hopefully, after asking and just listening and seeking to understand the whys, you may be able to find some solutions. We all want to control our destiny and maintain our dignity – we want and need to be the authors of our own story. Starting here can be very helpful.
- After seeking to understand and respecting their view of their future, focus the more practical discussions on 2 key areas: a) safety; and b) quality of life. Maybe have these conversations on another day. Let the first discussion about their wishes settle with you and give them time to feel heard. For the next conversation focus on the these 2 areas:
Fall Risk: From a safety point of view, your biggest concern should be a fall at home. When falls occur, full recovery is very difficult and situations can change fast. There are 3 big signs that a fall may be likely:
- How is their balance? Do they get dizzy or lightheaded? How are their feet? Do they have any serious foot problems that might precipitate a loss of balance?
- Are they taking more than 4 prescribed medications? This quantity of prescribed medication seems to be correlated with side effects that can lead to falls. If they are taking more than 4 prescribed medications, make sure their doctor considers the risks to their ambulation.
- Do they have muscle weakness? Of particular concern would be weakness in their legs and feet
I appreciate that these may not be easy for you to learn about. If you have any reason to think that they have 2 or 3 of these, it may be urgent to minimize the fall risk or at least have back up if the risks continue. Do they have a Medical Alarm product (Lifeline etc……) that they can use in the event of a fall? Consider getting the Apple Watch 4 with fall detection if you think they will remember to charge the watch daily. Can they afford a professional caregiver? Can steps and carpets and other trip risks be eliminated from their daily path? Has an Occupational Therapist assessed the house and recommend basic safety devices?
Quality of Life: The biggest contributors to depression in seniors (particularly in nursing homes – but I think it applies everywhere) are: loneliness, helplessness, and boredom. To fight these scourges, consider the following:
- How can you help them have companionship? This can be a professional caregiver and/or time with family or friends or anything else that connects them to others. Would they volunteer at a hospital or charity or religious institution or the museum or library?
- Is there an opportunity for them to help take care of somebody or something else? Everyone needs some purpose: helping with grandkids, having pets to care for, doing volunteer work etc….. Anything that makes one feel that they are contributing and needed is very worth while.
- Do they have things to do? Is there any spontaneity in their life? Are their days different enough so that there is something to look forward to?
These 2 lists may seem obvious. That doesn’t mean that they aren’t critical. Take them seriously.
Of greatest importance when trying to talk to a loved one about their well-being is that you respect that it is their life and they need to be the author of their own story. Finding out what they want, or helping them figure out what they want, is more important than trying to get them to do the things that you, as a loved one or friend, think are good for them.
Nobody ends their eulogy for their loved one saying: “My dad did what I wanted him to do in the last few years and he was better off for it.” Much more often what is heard is: “My dad was able to maintain his dignity until the end. He got to make the decisions about how he wanted to spend his life, and I couldn’t be more proud to be his son.”
Many of these considerations come from a great book titled “Being Mortal” by Atul Gawande. I use them with my clients and their families regularly and it makes a difference.