When someone sustains a spinal cord injury, there are supports in our healthcare system for rehabilitation. But for partners who become caregivers, fewer resources are available. Spinal Cord Injury BC groups and activities can be great for building an understanding of SCI and finding support—after all, an injury impacts family and friends too. And, where one-on-one support is not available for caregivers, there is an overwhelming amount of information online. These 10 tips can help you balance the roles of partner and caregiver successfully.
1. Know who your trusted supports are and get them involved as soon as possible.
Even if you don’t tell them about your daily life, a quick update every now and then will suffice. This way, if you require their assistance at some crucial point, they are not clueless.
2. Do not let the others’ expectations guide you.
It is common for people to ask questions like “does (s)he take sugar with that?” or “why aren’t you pushing him/ her?” Over time, you will find a way to collectively respond to such remarks and be with each other as you deem fit.
3. Enjoy your sex life.
Contrary to popular belief, sex doesn’t have to come to an end after SCI. There will be challenges, and it will be different. Yet, intimacy post-injury is possible. Have a look at the sexual health resources on our database for ideas. Expect that people will ask you about your sex life but know that you do not have to answer.
4. Have a life aside from your partner’s.
Life after an SCI shouldn’t be any different than the life you two live now. You are more than your partner’s caregiver, and cannot be an effective caregiver unless you take care of yourself, too. It’s not selfish to indulge in self care and put yourself first at times.
5. Be prepared to fight for your relationship.
At times, you’ll be up against those closest to you—remember that they don’t live your daily life and it may take time for them to understand why you choose to be with your partner. You may also have to remind yourself at times that your fight isn’t with your partner, but that you are fighting together against barriers.
6. Get comfortable sharing.
You’ll need to adjust to your new life, new roles, and the presence of new people and professionals in your life. Care aides, physiotherapists, occupational therapists, doctors, nurses, and maybe even lawyers will become a part of your team in caring for your partner. They are there to help you so reach out to them when you feel the need to do so.
7. Expect to have to answer lots of questions.
People will ask you questions out of ignorance, a sheer will to help, curiosity, and other reasons. You don’t have to answer them all—in fact, the perfect response to a rude question might just be silence, and not dignifying the question with an answer. Nevertheless, be prepared.
8. Stand your ground.
It is quite common to feel guilty when you’re a caregiver, especially initially. This could be amplified if you, the caregiver, are able-bodied and your partner isn’t. Don’t let your guilt taint your decision making process. Ask yourself: would I act this way if my partner didn’t have an SCI? Several online forums, like www.apparelyzed.com/forums/, can connect you with people in the same boat. They’ve been through similar experiences and emotions, and can help support you during this process.
9. Join a support group.
Peer networking can be immensely helpful for many people. Connect with a Peer staff member at SCI BC—they’re experienced in matters specific to SCI and can connect you with other staff and community members with whom you can relate. Plus, there are support groups for caregivers that are facilitated by the Family Caregivers of BC all over the province. If you can’t quite find what you’re looking for, do a quick search for forums online.
10. Do not become your partner’s caregiver first—be his or her partner first.
While it is recommended that the roles of caregiver and partner be fulfilled by two different people, the reality is that most spouses do become caregivers for their partners. This is especially true in rural communities. Be mindful of your roles and prioritize them.
Spinal Cord Injury BC provides support services for members as well as family. Contact our Peer Program to find out if there is a local caregiver you can connect with.
Want to read more advice about how partners of those with SCI balance the roles of partner and caregiver successfully??
Read our Spring 2016 issue of The Spin magazine for firsthand stories from our SCI BC Peers!
