Being my husband's primary caregiver, for much of the time, his only caregiver, has taken it's toll on me.
One of my biggest challenges was losing a sense of self. As Eric's care got more intense and technical, it consumed my whole day. 24 hours of it for days on end. I was not the same Melanie. Not only was I mourning the loss of my husband as I knew him, but losing myself in all this as well.
Here are some tips I was given and I wanted to pass them on. I think these tips apply to many situations.
1. Look back at old pictures and remember activities you enjoyed before all this ALS crap went down. Think about what made you excited previously and bring that Melanie back slowly. Simply because my wifely duties and priorities have changed, doesn't mean I needed to drop all of my previous interests and hobbies.
2. Reach out. I'm good at this. Sometimes too good. But it's important to have an army by your side. Some who will be REAL with you too. Not just ones to blow sunshine your way whenever you're down. You need those too though so don't count them out. And you know what.. people want to help out. It feels good to make someone else's day a little brighter.
3. Reach out. I can't stress this enough. You can't do it all yourself all of the time. This illness has taught my kids so much about being humble and empathy towards others who are hurting. Showing your kids there's no shame in asking for help is also an important life lesson. They will have times in their life when being a mountain unto themselves will not work.
4. Journal. My friend Heather gave me a book to journal with in the middle of Eric's journey with this disease. I can look back and see how far we've come. The kids have gone through some really hard times. And I've felt like a failure. But, reading back at all that's happened and how well they're doing is reassuring. Maybe my parenting skills don't suck that much after all.
5. Don't beat yourself up. And don't be afraid to get some professional help if you need it. Seriously.
6. And don't forget that you KICK ASS. I look in the mirror every morning and tell myself this very thing. And yes, I really do. Do you know why? Because I really do. And you know what else? So do you!
Melanie Anderson is married with two children and they live in the Vancouver area. She is also a full time caregiver to her husband with ALS. Blessings are found in unusual places.
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