ALSCaregiver.com

One of the hardest things for me to do, besides coming to terms with mom’s ALS in general, was to learn what I needed to do for myself.  Being a caregiver can be a wrenching experience but there are a few things you can think about that may help.

1.  You’re allowed to be ticked off and frustrated.
It was hard for me to accept the anger that came several months after mom’s diagnosis.  I was angry at ALS itself, angry at the doctors for not being able to fix it, angry that my life had been altered and angry at myself for being angry that my life had been altered.  I had to talk to several professionals before I would come to terms with those last two in particular.  It’s not only natural to be angry at the illness and the doctors for not being able to cure it, it’s also natural to feel anger about what’s changed for you.  You are human after all.

In my own personal experience, I’d save several thousand dollars so I could move to California where my friends lived, and was really looking forward to it.  Suddenly, I realized I needed to stay home to help mom, and I spent all that money and more converting the garage so I could have a nice big personal space to myself.   Now I couldn’t afford to move even if I wanted to.  I had major anger issues over this – not so much at mom, because I knew she couldn’t help it, and not even as much at the situation.  I was angry the most about the fact that this angered me at all.  Why couldn’t I just accept that I was needed and make the most of the situation?

Because I’m normal.  We humans tend to want things to go the way we’d planned and it’s jarring when roadblocks come up.  It was especially hard because we had a roommate at the time who made living in the house close to unbearable.

So how did I fix the anger problem?  First, I took a stand and got rid of our lazy and aggravating roommate.  That helped a LOT.  But mostly I discovered some very important things:

• I shouldn’t be angry at myself for naturally being angry at what was happening.
• Anger I felt toward my mom wasn’t actually directed at her – I was mad at what was happening to her, not at her.  But the brain sometimes tries to find a human face for it because it’s hard to focus anger at something you can’t even see.
• Even though I’m 29 now and most people would consider this the time I should be out doing other things, I can’t.  That’s something I had to come to terms with.  I changed my thinking to say, “I’m ONLY 29.  I have time.”  The here and now is not about me, it’s about the person who made me who I am and gave me just about everything I have.  I would rather have given back to her way farther down the road but that’s not the way things worked out.
• It’s important to live now.  Don’t look at your life as something that will start later – because the only way it can start later that was is if your loved one is gone.  That’s a painful thought to contemplate, and thinking “I can do this after that” just makes you angry with yourself again.  Instead, live now, for yourself, while you’re helping somebody else.  I don’t think about it as missing out on being in California.  I look at it now as having a life and having fun here.  My life will be different eventually, but since I want mom around as long as possible and she’ll need me for that entire time, I can’t get bogged down waiting to live.  If I don’t live, how can I help her?

2.  You’re allowed to be sad sometimes.
ALS is a terrible disease that causes a person to physically decline.  It’s not only sad for them, it’s sad for those caring for them too.  You might think you have to “stay strong.”  That’s all well and good but if you don’t let it out sometimes, it will kill you.  Every now and then I just have to break down and cry, and it’s usually triggered by something tiny, like my cat sneezing or something.  I’ll just go in my room and let it out for a while.  It’s very refreshing and lets you get past that bit and go on with what you need to do next.

3.  You deserve some fun too.
It’s very important to make sure your loved one has fun things to do within their capabilities.  My mom and I love to have our Saturday “Friends-a-thon,” where we go through a disc or two from the Friends series (and there’s a LOT of them).  But it’s also important to have some fun yourself.  This is one way that building a caregiver network will be a big help.  Find caring people who are more than happy to step in for you sometimes and arrange for YOU moments.  Go to a movie, go see some friends, take a short trip, whatever.  Don’t lock yourself in the house and think your life can’t move forward because that isn’t healthy.  And if you aren’t healthy in the head, it will seep out and hurt your patient too.

4.  Take care of your body.
I’ve learned that a great way to clear the head is to clear me, period.  Personally, I like karate.  I don’t take classes, I just go through the motions in my room, but it works up a sweat and lets me focus on something else.  Being caring of your body also can inspire your patient to not give up on whatever they are doing to help their bodies.  Do some yoga, get a Gazelle, sit in a far infrared sauna, do some karate, go running, whatever.  Keep the blood flowing.  Body weight exercises (using your own body weight instead of actual weights) and parts of combat conditioning not only get your heart going but also make your stronger and more agile, which will help with body mechanics.  I have a great book on body weight/combat conditioning.  There’s one for men (Pushing Yourself To Power) and women (Every Woman’s Guide To Personal Power).  I also have Best Karate to help me out.

That’s all for this blog.  Check out my other blogs and upcoming ones for what pops into my mind next.