How a caregiver has fun - and the patient too!
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Girls (and guys) just want to have fun
Being a caregiver for someone with a terrible illness can be a journey all by itself. It's difficult, sometimes painful, many times rewarding and oftentimes stressful. Especially if the patient is your mother, and the disease has no cure. In my article called Caring for the caregiver I went into some basics about what I do to make it all easier. Some asked for me to get more specific, so here I go.
It's important to take care of yourself while you take care of your patient. Hopefully this page will help you out with that.
It's important to take care of yourself while you take care of your patient. Hopefully this page will help you out with that.
Contents
Finding time for myself
My mother needs quite a bit of help and will need more as time goes by. I also have a full time job and several projects I like to keep up with, like ALSCaregiver.com. Add in caring for my animals and there's not often a lot of time left over.
I've solved this by training my brain to see open moments when they come, and then I take advantage of them. It could be that I know mom will be out on Saturday next week and I can do whatever I want that day, or it could be that the cable man cancels and I suddenly have a half hour that had been full before. I take those moments at every opportunity and use them to my advantage.
I've solved this by training my brain to see open moments when they come, and then I take advantage of them. It could be that I know mom will be out on Saturday next week and I can do whatever I want that day, or it could be that the cable man cancels and I suddenly have a half hour that had been full before. I take those moments at every opportunity and use them to my advantage.
Not every moment needs a task
I have become a huge fan of relaxation. It's important to remember that not every spare moment has to have a task assigned to it. Sometimes I'll take ten minutes just to sit and stare at the wall. That may sound boring as all get out and it is, but that's the point. It's ten minutes of absolutely nothing, which will calm me down nine times out of ten. Sometimes I'll close my eyes and just try to drift for a little while and not think about all the things I usually have to think about.
That's fine, but my mind keeps turning...
If you're like me, sometimes just being quiet doesn't help - it just makes the stress twist around in your head even more. So I can't just stare at the wall every time and you couldn't either. When my mind won't let go, and I have a half hour or more, I'll force my mind to turn to my body instead.
The best method I've found of doing this is by using my body as an exercise machine. I don't own weights or treadmills because they don't really work. Instead I use my mind to do more than those things can provide.
I have a good book called Every Woman's Guide to Personal Power (there's a version for guys too) that has great illustrations to help with this. Essentially, you use yourself as your weight machine. Instead of pulling up a dumbbell, you can pretend you're holding one and it's chained to the floor - you end up using more muscles to do this than if you actually had a dumbbell. That's just one example. I also make use of Hindu pushups which are described in the book as well. When I first tried, I couldn't even do one, now I'm up to about six. Concentrating on this like you have to in order to get the full effect very successfully keeps my mind off everything else.
Karate is the other physical way I clear my mind. I don't take classes, I just do punches, kicks and general basic movements, but they get my heart pumping and by concentrating on where I'm striking, I'm NOT concentrating on everything else. I like the book Best Karate and there's a website that offers free online videos of basic techniques as well.
The best method I've found of doing this is by using my body as an exercise machine. I don't own weights or treadmills because they don't really work. Instead I use my mind to do more than those things can provide.
I have a good book called Every Woman's Guide to Personal Power (there's a version for guys too) that has great illustrations to help with this. Essentially, you use yourself as your weight machine. Instead of pulling up a dumbbell, you can pretend you're holding one and it's chained to the floor - you end up using more muscles to do this than if you actually had a dumbbell. That's just one example. I also make use of Hindu pushups which are described in the book as well. When I first tried, I couldn't even do one, now I'm up to about six. Concentrating on this like you have to in order to get the full effect very successfully keeps my mind off everything else.
Karate is the other physical way I clear my mind. I don't take classes, I just do punches, kicks and general basic movements, but they get my heart pumping and by concentrating on where I'm striking, I'm NOT concentrating on everything else. I like the book Best Karate and there's a website that offers free online videos of basic techniques as well.
Making time with the patient my time too
I'm very fortunate that my mother likes a lot of the same things I do, but many of those things we discovered after her diagnosis with ALS. If you find things to do that you both like doing, it's good for the patient and is like free time for you. Mom and I like to watch Friends (thanks to the wonderful man who sold me the whole series for $35), Law and Order: SVU and wrestling. That's quite a bit of tv time right there that we can enjoy together. We also like to go to concerts, wrestling shows and to see nature. Two for one is always a plus.
Alone time and your caregiver network
It might sound strange but you have to get away from your patient sometimes, or you'll go stir crazy. It's only natural. You need to breathe to be fully capable. So I make sure I spend time playing with my dogs, loving on my cats, playing my drums or talking to my friends. The most important thing I've done is find several of mom's friends who enjoy taking her places. They can come over and have a gabfest or take her out to eat or to a show I have no interest in and I can use that time to do whatever I want. I get out of the house whenever I can, even if it's only to walk the pups.
I can't stress enough how important it is to find people to help out and take off the load on occasion. No matter how much you love the person, there has to be some separation or you start living for your patient. That makes the things that happen to them even more devastating to you. It's hard enough as it is, so always find alone time by making sure someone else is available to help you out.
I can't stress enough how important it is to find people to help out and take off the load on occasion. No matter how much you love the person, there has to be some separation or you start living for your patient. That makes the things that happen to them even more devastating to you. It's hard enough as it is, so always find alone time by making sure someone else is available to help you out.
A little amusement...
This is here just to let you have a chuckle. Laughing is always good too.
Playing at Bear Country
On our last trip we stopped by Bear Country and got to see the cutest baby bears ever. We named one Reverend because he would eat corn with one paw and hold the other in the air as if he was praising the gods for the sweetness of his meal. The littlest one we named Tumbly, because he was always in a fight and never backed down.
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Related links
- ALSCaregiver.com
- My experiences as a caregiver.
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by TribalDancer
Who am I? My name is Christy and, among other things, I am my mother's caregiver as she battles ALS, I'm a webmaster and graphic designer, a drummer a... (more)
