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Thursday, January 19, 2006

Caregivers

Ok, first of all, I don't know why, but the word Caregiver kind of bugs me. I mean, it's true that my husband gives good care, but theres so much more than just caring that he does for me, that that word kind of wimpifies who he is. Then, there's also the fact that it implies that I can't care for myself. Now, in alot of ways that's true, but it's not like I need spongebaths or to be handfed, so until I'm in a nursing home and unable to do any of those things for myself, I'm not going to like that term. However, it's the common term that people use to describe people who give assistance to people who need help and there is a tone of respect that you take when you refer to a Caregiver, so I guess that's a good thing, because most certainly Caregivers do deserve your respect.

I thought since I bitch and moan so much about how much pain I'm in all the time, (lately I'm averaging a 6-7 on the pain scale, yuk!), I should probably spend a little time talking about what you could do if you have a spouse or loved one who suffers from migraines to help her.

When I'm in an accute phase of migraine, where my pain level shoots way up there, my husband will act like my go-fer. I hate asking him, (or anyone, for that matter), to do stuff for me. I've always been really independent and it bugs me that I have to depend on him to help me out, but that's the fact of the matter. I do have to depend on him. So, if I need my meds and it hurts just way too much to even move, he'll bring me my pills. He brings me an ice pack, turns off lights, fields kiddie questions from our daughter, brings me drinks, writes down the times I take my meds and my pain level on my diary, so we won't forget and basically takes charge of making sure I don't take more too soon. He even brings me a plastic bowl to barf in if I'm really nauseaus. If I need to go to the hospital, he doesn't question my decision, he doesn't huff and puff about it, he just helps me get ready to go and we go.

My disease has a major impact on Hubby's life and time. We used to enjoy going out to dinner occasionally, going to the movies, going for long drives, and going on family outtings. These are all the fun things that he misses out on, too, because I'm not mobile that way anymore. Heck, we used to even find time to have sex, but, because my migraines are effort-induced, (I forget the technical name of it, but that's what it means), we don't get to do that anymore, either. I'm pretty sure that neither of us ever thought that our marriage would be less than equal, but it is. As a feminist, that really irks me, but it's also my reality, so I have to deal with it. The truth is that all the work falls on his shoulders and, when I'm dopey on drugs, all the decisions also fall on him. That's alot for a guy to have to handle on his own. I'm sure that he never expected to have to take care of two babies in life, my daughter and me, but he does.

To his credit, he doesn't make me feel like it's all my fault this happened to us and he hasn't left me, yet. Though, if he ever did want to, I'd totally understand.

So, if you want to know how you can best support and assist someone with migraines, just ask the migrainer what he/she needs from you. Then, if she says, just leave me alone, don't be offended. She's telling you that the best thing you could do is turn off the lights and let her be in complete silence for awhile. When she reemerges, then that's when you can give her a big hug and welcome her back to the land of the living. If she tells you that you could do some things to make her more comfortable, then do those things QUIETLY and don't require her to say alot. It hurts to talk when you have migraines. Hell, it hurts to think! But, I have to tell you that, no matter how helpless you feel by not doing anything, if that's what she wants, then do it. She'll be eternally grateful for your understanding afterward and she'll show it. Most of all, be understanding if a migraneur has to cancel her date with you at the last moment. We don't schedule the pain, it unfortunately comes right when we least expect it. One of the big bummers about migraine is that it seems to come right when you're about to have fun, or while you're having fun. It's a fun-thief! So, if your friend/spouse starts migraining while you're having the time of your life at a party, drop everything and take her home and don't give her static and tell her she does it on purpose, because that just makes you look like a real asshole. One thing that most of the migraneurs mentioned is that they like to be checked on from time to time. One woman said that her thoughtful husband installed a wireless doorbell between their bedroom and the other end of the house, so that he'll know if she needs anything, because she likes to be left alone in a dark room. I thought that was so sweet.

I don't like to be left alone for that very reason. If I'm out of sight, I also tend to be out of mind, and I'd never get the help I need to get more meds, a drink, or be led blindly to the bathroom. That doorbell idea sounds really good to me. So, hail to the Chief, he's the Chief and I shall hail him. My husband is truly a qualified helper, which seems to be the definition of a spouse in the bible. The bible calls us an "help meet for...". There's a big difference between help-mate, which is how most people read that scripture, and someone who's qualified to help you out when you're in big trouble in my book. It's like the difference between having a pal who's clueless with you when you're bleeding to death and having an EMT, who knows just exactly what to do to handle the situation. It takes skill and brains.

What do you do for your migraining loved one? What do you like to have done for you when you're having a migraine? Please, leave a comment and let me know about your "caregiver" or what you'd want him to do if you had one.

7 Comments:

At 7:10 PM, Blogger Kim said...

Wonderful post!

"In sickness and in health" - you've got a wonderful husband!

Sounds like the main things are to check on the patient frequently, make sure they have a way to call you when they need you, keep things as quiet as possible and require as little interaction from the patient as possible....all good nursing interventions in my book, at home AND in the ER.

 
At 7:31 PM, Blogger Leann said...

I hire "care givers" and we call them personal assistants. I think that fits much better.

 
At 1:07 AM, Blogger Jessica said...

Hey, Kim, thanks for the affirmation. :) What do you think of the advice I give in A Visit from the Migraine Fairy, December? Did I miss anything on your end?

Leann, that's good too, but I think HERO is even better. :)

 
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