TIPS FROM A PSCER AND HER CAREGIVER HUSBAND
“Just let me know what I can do to help.” – a phrase we’ve all heard or even said to someone going through a trying time. Oftentimes, that statement adds extra stress to the person who needs the help. They might not know how to respond or feel compelled to say anything to make the friend or family member feel helpful. The end goal isn’t to add an extra burden – but rather to provide meaningful help. There are a few different scenarios that you might encounter as a patient or caregiver, and we’ve provided tips on how to handle each situation below.
You could use some help. Don’t be afraid to take people up on their offers to help. They are asking because they really do want to do anything they can for you, and don’t feel like you owe them anything. A good start is to sit down and create a list of things that could be “outsourced”. There are many things that could be done by a family member or friend. Keep a running list of errands or tasks that could be done by someone else. It will make the friend/family member feel helpful, and checks things off your ever-growing to-do list! Examples of tasks that could be outsourced are things like:
- Grocery shopping
- Running to the hardware store to pick up something (lightbulbs, etc.)
- Dropping off and picking up laundry
- Meal preparation / meal train
- Playdates for the kids
- Checking on pets
- Driving to and from appointments
- Being an advocate for you in appointments or with paperwork (this requires a close relationship as personal information would need to be shared)
Every time someone asks what they can do to help, send them something from the list. It may take them 10 minutes to do, and they will feel helpful doing it. They know that you would willingly do the same for them if the roles were reversed. If the list becomes too much to manage on your own, ask your caregiver to manage the list for you and send out tasks as they feel appropriate.
You have enough help, but people keep asking. Some people are blessed to have many friends and family members close by to help with everything they need. Things may be under control, but people always want to help. Perhaps the neighbor next door might ask what they can do to help. A quick explanation of the family members/friends that are around to help you will diffuse the immediate ask. Saying something like, “Thanks so much for the offer, but I’ve been so lucky to have my parents/friends around to help with everything I need at the moment. I’ll be sure to reach out should anything come up.” Or, send them something from the task list.
You don’t actually need help. Although dealing with a chronic illness is draining, sometimes getting out and doing things for yourself keeps you going physically and mentally. If someone asks what they can do to help, but you don’t actually feel like you need help, you could say something like, “Thanks so much for the offer. I’ve had a hard time staying hopeful during the harder days, so I would love your prayers,” or ask for a donation to PSC Partners by saying something like, “Thanks so much for your offer, but I’m getting by just fine, currently. However, some others in the same situation as me aren’t doing as well. If you’d like to help us all, donating to PSC Partners would be very much appreciated.”
Blog written by Tyler and Nicola Tessier
Nicola and Tyler Tessier reside just outside of Boston with their two young (and active!) boys. Nicola received a life-saving living donor liver transplant from her brother nine years ago and is doing well. When not advocating for organ donation and a cure for PSC, you can find them both working in the marketing industry.