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

When you have a chronic illness — or know someone who does — help can be part of your relationship. More commonly, the word caregiving is used when there is an element of caring for someone who has physical limitations, such as 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. Here are four tips to help you navigate this process.

When we think about caregiving, it is usually in the context of someone who needs physical 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.

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?

Defer to the person you are helping

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. 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 some 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.

A man in a woman's hands reach for each other across the background of blue sky with white cloud. Pinterest graphic "4 Ways to Use Respect and Dignity in Caregiving for Chronic Illness" and including the logo for The Seated View

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.

Remember that you are not a saint

When other people here that you are helping a friend or family member who has a chronic illness — or that someone is helping you because of your condition — it’s common to hear about how wonderful the person providing the caregiving is. Saint-like, even. Nothing could be further from the truth. Helping each other out is part of any relationship, whether you’re looking at moving, picking up groceries, babysitting, referring to a community source or any of the many ways we help each other in day-to-day life. The trick seems to be whether this assistance is related to basic functions, such as showering, going to the washroom or getting dressed, which are perceived as completely different. Don’t buy into it, either of you. Putting the caregiver on a pedestal is the first step to messing with your relationship as equals and can lead to some pretty toxic power dynamics. One person may be helping the other with physical tasks, whereas the person who has an illness or disability is quite likely helping in other, less physical ways.

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

 

  

1 Comment

  1. Rick on November 30, 2016 at 1:36 am

    or as Bob Dylan said,

    “may your do for others and let others do for you” Bob Dylan – Forever Young