Thanks to all of my wonderful friends at meningiomamommas.org we have come up with the ultimate caregiver list. I wish that I had this before surgery.
*Please understand if I say or do something strange, I am not thinking clearly yet.
*Do not constantly remind me of what I can or cannot do. I had surgery, but did not revert back to my childhood.
*Please help me with my meds, as I might not be able to read the small print on the bottle yet.
*If you would make a meal for me, I'd love to eat somebody elses cooking.
*If I am wandering the house at 2 a.m. please don't ask me if I shouldn't be in bed. I'd love to be, but sleep comes harder for me now.
*Occasionally get me out of the house, even if it is just a ride to the Dairy Queen for a banana split.
*Let me work the television remote for a while.
*Offer to do the laundry or wash the dishes or change the bed sheets as I don't have a lot of energy right now.
*Take me to followup appointments with the doctors and take notes for me, as the memory isn't the best right now.
*Just help me get through this and I will be appreciative forever.
* please make a chart of all my meds and help me remember to take them
* take me places, even if it is just for a car ride. cabin fever is awful on the recovery process
* do more around the house, cooking, cleaning, kids, etc.
"Go ahead and give me a call, I welcome phone calls."
"Make that meal if you want, it won't go to waste."
"I don't mind talking about my brain tumor, it even has a name."
"Let me tell you about my steroid highs."
"I know I might be over-doing it, but it helps to do things."
"Sometimes it just helps to vent."
"Tell me about work, and get my mind off things right now."
Carol you and I are one in the same......
Pleeeeeeeeaaaase, DON'T hover over me,I know you mean well, but it annoys ME. RESPECT MY PRIVACY. If I want to be left alone, leave me alone until I show up in the kitchen, again.Ignore my mood swings, the doctor messes around with my brain. It's nothing personal, it's my lack of inhabit ion.Thank You so much for giving me your time. I'll never forget it.
Take time for yourself. It will do us both good.Rent a movie that we will both enjoy and let's watch it together. Forgive me if I doze off.Talk to me about normal things--kids, work, sports, politics--anything that takes my mind off my worries.Stay positive even when I'm not. Attitudes are contagious.Make plans with me for something in the future whether it is dinner and a movie or a weekend trip to a favorite spot.
Kathy who's mother is the one with the M stated.....
Encourage and point out all the triumphs and victories, no matter how small or seemingly insignificant.Routines are good, but be flexible for much needed rest time.Schedule time for yourself. Think of yourself as a pitcher of water, if you keep pouring out to someone else it'll empty soon - go off and fill yourself up as much as possible!Remember, no matter how difficult and frustrating it might feel for you at times, the patient does not WANT or CHOOSE to be dependent. They are dealing with physical discomforts, emotional highs and lows, beaten down spirits, feeling completely out of control, and in some cases, the residue and after effects of months of anxiety, stress and fear.
Don't Look Back....ME....posted...
*Please don't point out that we are in debt up to our ears and beyond every five seconds because of my surgery. It makes me feel guilty and is making me depressed.
*Try to remember that I am the one who had surgery and occasionally I am the one who needs a shoulder to lean on and a strong arm to lead the way.
*I may not remember everything but I am not a child and it's still me under here. I am still fully able to take care of things.
*I am still able to make decisions and when you go behind my back because you "don't want to bother me" it hurts.
*Please know that I'm not going to break. I like to be cuddled and held. I want to be hugged and kissed and my hand held.
We all have a lot on our plates and are dealing with them in different ways. Some of us want to be held, some of us want to be left alone. I would love to be held but I can't stand the smell of smoke and my husband smokes right now. It doesn't mean that I don't love him or I'm not attracted to him. The meds that I am on make me sick enough without adding to them.
I'm trying to figure out why I'm feeling so bad all of the time. I don't have all of the answers but this does have a lot to do with it. I'm not the strong one that I though I was. I need a shoulder every now and then. I can't stand the fact that all I do every day is pick up and clean after everyone else. I'm a glorified janitor. I have lost me and all that is me. I have no opinion or say in anything anymore. If I want to watch one of my shows everyone leaves the room. If I leave the room I get 20 questions.
I cook, clean, and take care of the kids...that's it. I need to go back to work and find me because I sure as hell don't like who I am becoming....I don't like this person at all. I can't fake happy forever......
I called the doctor this week to see about going back to work and he doesn't think it's a good idea. I think that only one other person agrees with him....my husband. I called my old work and they said that yes she will find a spot for me when I have a "full release" to work. I'm not sure when that's going to happen.