This post was originally published in the Spring 2016 issue of SCI BC’s Spin Magazine.
When someone sustains a spinal cord injury or other physical disability, there are supports in our healthcare system for rehabilitation. But when a partner becomes a caregiver, there are fewer resources available. Spinal Cord Injury BC (and other provincial SCI organizations') groups and activities can be a great way to find understanding and support—after all, an injury impacts a person’s family too. Here are some important ways that you can 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 others’ expectations guide you.
It’s 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 in the way you both want. And certainly make it clear to whoever is asking these questions that they should be addressing your partner, not you.
3. Enjoy your sex life.
Contrary to popular belief, it doesn’t have to come to an end after SCI. There may 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.
This shouldn’t be any different than what you did before the SCI. It’s not selfish to indulge in self-care and put yourself first at times. You are more than your partner’s caregiver, and cannot be an effective caregiver unless you take care of yourself too.
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 your 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 field lots of questions.
People will ask you questions out of sheer ignorance, a genuine desire 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. Regardless, 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 a disability? Several online forums, like Apparelyzed
, 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. Connect with an SCI BC peer staff member—they’ve got personal experience and can connect you with other staff and community members with whom you can relate. Also, there are support groups for caregivers 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 of 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 people with SCI and related disabilities, along with their families. Head to sci-bc.ca
to contact their Peer Program and find out if there is a local caregiver you can connect with.