When your Spouse or Partner is your Caregiver
I have been with my husband for almost 10 years. He has been by my side every step of the way through this difficult journey. We’ve had our ups and down, and even were blessed with a beautiful baby girl. I asked my husband some questions about being my caregiver, and here is what he had to say:
Angela: What would you say is the hardest thing about being my caregiver?
Edwin: The limitations on what we can and can’t do sometimes.
Angela: What’s the easiest thing about being my caregiver?
Edwin: That you don’t give up, even with the physical limitations you have.
Angela: How do you make sure your needs are met?
Edwin: I make some time for myself a few times a month like going out to play soccer with friends.
Angela: What are your feelings about me living with Myositis and there being no cure?
Edwin: I wish it was considered a bigger issue so there would be more funding for it. I know that Myositis is really rare so there isn’t as much as funding for it like there is with cancer.
Angela: Do you often feel overlooked?
Edwin: Sometimes with the overwhelming effects of Myositis, my problems can be overlooked.
Angela: What is one thing that keeps you going through your life as a caregiver?
Edwin: The fact that you don’t give up. And also my love for you, of course.
For a lot of us our spouses/partners are our caregivers. This can be a blessing and a curse. Your partner is there with you almost 24 hours a day, 7 days a week, and the things you do during your time together can be repetitive. Traveling to doctors appointments, lab tests, pharmacies, physical therapy, infusion appointments, etc., are some things you might be doing on a weekly, or even daily, basis. This can take over your life if you let it. When your partner is with you every step of the way, their feelings can sometimes be overlooked. This is hard on them, too, especially if they have never lived with a chronic illness or autoimmune disease such as Myositis.
Setting aside time can be difficult with a disease as unpredictable as Myositis, but it doesn’t have to be set in stone. On your “good days” remember to try and do something special for your partner or spouse. Also, remember that intimacy is important, and so is remembering your limitations. Being comfortable is key and can really bring partners together.
Those of us with Myositis often feel overwhelmed with everything we have to do while dealing with everything we “can’t” do. It can take up our minds, body, and spirit. It’s difficult to put ourselves in someone else’s shoes when we feel so isolated and worn down from our disease.
It might be difficult to hear your spouse be this honest. If you don’t feel you can handle the truth, it’s OK to not ask these questions. It might be harder to hear early in your diagnosis, or if you and your partner are not communicating well. But know that your partner is caring for you because you matter to them. It might not seem like a 50/50 relationship, but they wouldn’t do it if it wasn’t important to them, or if you weren’t important to them.
Stay focused! You are a team, and together, you can live a happy, fulfilled life.
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