Community Views: Top Tools for Caring for Someone With Parkinson’s
Learning how to care for a loved one with Parkinson’s is not something that happens overnight. Most people in the community learned how to provide the right level of care over time through a process of trial and error.
To help new caregivers find what works sooner, we put the experience of our community members to good use. We reached out to followers of our Facebook page and told caregivers and care partners, “List an important tool or device used in the daily care of your loved one with PD.”
We heard from 60 people in the community, and here is what they said.
When you are responsible for yourself as well as someone else, it helps to get organized. For many of you, this means using paper or online calendars to track doctors’ appointments.
It can also be helpful to use daily alarms on phones or watches to help your loved ones know when to take their medicine. A few in the community also suggested days-of-the-week pillboxes to help keep track of when medicine has been taken, since that can be one of the easiest things to forget.
“Calendar. Helps to keep his days straight and remember when his doctors’ appointments are coming up and what time they are.”
“Weekly meds dispensers with 4 boxes for each day. I fill 4 for the whole month.”
“Alexa (Amazon Echo) or similar for reminders, music, communication, and, when used with smart plugs, hands-free on/off lamps.”
“Alarms on my phone for meds.”
“Fitbit for its alarm to remind him when it is time to take his meds.”
People with Parkinson’s often deal with stiffness and tremors. However, this does not mean exercise is no longer possible. Talk to your loved one’s doctor to learn which exercises are safe for them to do – especially in the home – to help keep the blood and feel-good endorphins flowing. Massage and seated stretches can also do wonders.
“We have an exercise area in the house with a recumbent bike, stretching band, and gymnastic tumbling mat for yoga and stretching. We both use it every morning – no skipping. It is a time for quiet and reminiscing, practicing gratitude, and talking about the challenges for the day.”
“Massage. My Joe says it helps a lot when he gets twitchy or has pain and discomfort when his hands or feet cramp. It also helps him to settle at bedtime. It is a good tension and stress reliever.”
Take advantage of mobility aids
As Parkinson’s takes a greater toll on your loved one’s physical health, you may want to explore the options that help him or her navigate your home. This could mean grab bars by the toilet and shower, or perhaps a transport chair.
“Heavy-duty, bolted-to-the-floor grab bars around the toilet as well as in the shower.”
“A lift for up the stairs and a mobility transport chair.”
Learn the art of acceptance
Acceptance is a game changer. Most people do need time to feel whichever emotions come up – like anger or sadness – regarding their loved one’s diagnosis. But with time, it helps to let go of asking why and start telling yourself that this is what today looks like, and that is OK. Your loved one is going to have good days and bad days, and learning to accept both as they come helps you keep your mental serenity throughout it all.
“Acceptance and finding joy in every day to share with him.”
“The ability to let go and accept things I cannot change.”
Practice love and patience
The number one tip from our community members was patience. Living with or caring for someone with Parkinson’s can be trying. If you can, try to remind yourself that your loved one does not mean to be difficult. It is the disease that makes them forgetful or causes them to act in a challenging way.
When a trying moment shows up, the more you can stay calm – and not take their words or behaviors personally – the more likely you will be able to be present and take better care of them.
“Love and patience.”
“Right now, an incredible amount of patience.”
“Love and patience, but you also need a sense of humor.”
Thank you to everyone in the Parkinson’s community for all the shared suggestions. We are very grateful for your willingness to help others in this space.
Do you or a loved one use smartphone apps to help with PD management?