4 Ways to Use Respect and Dignity in Caregiving for Chronic Illness

Giving and receiving care is much more than just the physical act of helping and being helped. Both sides of the relationship have to find a new way to interact, and it can be a real challenge. It’s one of the reasons that half of every chapter in my new book Chronic Christmas: Surviving the Holidays with a Chronic Illness shares ideas for how loved ones can help someone with a chronic condition.

When we think about caregiving, it is usually in the context of someone who needs a lot of help. For instance, my attendants provide caregiving, helping me shower, get dressed, prepare food, and so on. But caregiving can be so much more — or less, if you will — than that. Any time you help someone, you are giving them care. It can be as simple as bringing your beloved a drink or snack while you’re up getting one for yourself. More commonly, the word caregiving is used when there is an element of caring for someone who has physical limitations, such as chronic illness.

As two adults engaged in a caregiving relationship, it’s important that you pay attention to the dynamics between you. It is especially important that you who want to help do so in a way that respects the dignity of the person receiving care. But what does that look like?

Who takes the lead

The person receiving care is the one in charge of this relationship. They know their body best and they know what they need. Think of yourself as the physical embodiment of their wishes, temporarily serving as their hands and feet as you do the things that are difficult for them. Ask how they’d like things done and wait for their direction. At the same time, don’t be a robot — participate in the discussion if the person you’re helping wishes it. 

Communication

Directing another person can initially be a bit tricky until the two of you find a balance. Make sure you communicate well. If the person you’re helping seems to be getting stuck, take a break for a cup of tea and a chat about how to move on. Receiving help can be difficult, especially at first. One of the ways you can help may be to gently guide the conversation about why you are there, and wanting to help in a way that uses dignity and respect. Talk about what that means to each of you.

Teamwork

There is a misperception in our culture that caregiving is something you do to a more or less passive recipient. Nothing could be further from the truth. Caregiving is a very active give-and-take that requires a dedication to teamwork. Both of you need to be ready to cooperate, to listen, and to work together in a way that respects the dignity of both of you. Yes,it does go both ways. You are not an indentured servant, so the words please and thank you are appropriate. Likewise, the person receiving help is not a passive lump.

Choices

Often when we help, we have a particular idea about what needs to be done. It’s tempting to swoop in and organize the other person. But that would be a mistake. As mentioned above, the person receiving help is the one in charge. That means they have the dignity of choice, not only in terms of the kind of help they receive, but how they receive it.

Are you doing laundry? Ask how they want the laundry done. Are you making a sweet potato pie and want to give them half? Ask if they’d like sweet potato pie or would they prefer something else. Do they want their home festooned with coloured lights and you think anything but white lights is tacky? Go nuts with the coloured lights and leave your opinions at home.

Do you have experience with giving or receiving help? What was useful in creating an effective and respectful relationship?

It’s Giving Tuesday. Starting today and through December 1, all proceeds from the sale of any of my books or products in The Shop will be donated to MSF/Doctors without Borders. To help them take care of people who live in conditions where there is very little dignity and respect.