I am sure that alot of you have experience (to some extent) with the following...People are always telling me to "call if I need anything." or "let me know what I can do to help" or "we're here to help!"
These 2 sayings have grown to irritate me!!
My problem: "I don't know What or HOW people can help me out." I don't know when people are available or the things they would "prefer" to do to help.
I do well for the most part keeping it together - next thing you know - everything blows up in my face! Keep in mind my children are 12, 8, & 4...no I have never raised them to do "chores" in the house - with the exception of keeping their rooms clean and picking up after themselves. Again, because I seem to be so "crazy in the head" lately, I do not always do a good job of making sure they do the few things I ask of them. Therefore I see no need to load them with extra chores that they wouldn't normally have,that I probably couldn't find time to enforece, that would not be fair to them - and I will not change that - there is no reason their responsibilities should grow because their dad has cancer & mom apparently can't keep up! I want them to go to school, get good grades, play the sports they always have, and just be able to be KIDS!! sorry this is another arguement I have had with some "concerned friends". Don't really care if anyone disagree's - we all raise our children differently. I understand that - but many do not!! (including some family!!)
Also, my husband is not able to work since diagnosis (Oct 08, GBM), I had to leave my job to stay home to care for him. He suffers with short term memory loss, uanble to take medications without someone handing him his pills/injections, unsteady gait, refuses to prepare himself even a sandwich...we have now reached a point that I do not feel that he should be left at home alone...he will drive if he thinks he needs something and no one is with him during the day.
EXAMPLE: (please excuse the ugly details)
We are at the soccer fields, about to leave practice 7:30pm - hubby went to the truck 10 minutes earlier because he was tired - just as the kids & I are approaching the truck I realized that my husband had lost control of his bowels!! I find 2 piles "of you know what" on the concrete right below the door to my truck - hubby is no where in sight!! Leave the 12 yr. old in charge of the other 2 while I set out to locate my husband (all the while I am crashing inside because I did not expect to have to deal with this while he is still mobile - and hurting for him because I know how he must be feeling) - finally find the husband, walk him back to the truck,clean him up as much as possible for the 20minute ride home. They youngest tells us that daddy smells like "poop"...thankfully everyone ignores him and he drops the subject! get home, let the dogs out of their crates & let them out the back door. Walk into my bedroom (where dog crates are located) & assume the odor I smell is from my husband going to our bathroom to shower. OH NO!! Realize that one of the dogs has also "you know what" all in his crate!! I let that FREAK'N dog walk across my carpet spreading his fece's everywhere...GREAT...still have to cook, bath the youngest, take a huge crate outside to wash it down, & bathe the 2 dogs!! Call my best friend of 18 years whom live's directly across the street (she does not work & her hubby (my hubb's best friend) is off for 4 days), tell her what is going on while attempting to start dinner...still crashing on my insides...little one wants to help cook...getting too close to the stove...hubby is now in his chair passed out (at least he is clean!)...and her response to all this is "How terrible"...hope you aren't up to late! So now, I have managed to get all the above completed - minus batheing the dogs & washingthe crate - when another of my hubby's close friends (also a neighbor) comes over asking how all is going...so I tell him what the evening has held and what is left to do - and he says "Why didn't you call?" I replied, "You weren't home...but there is plenty to be done!" What does he do - takes up 20 minutes of my time talking about my hubby - and walks back home!! Are kidding me - I thought these people supported me? Why are they abandoning me now? Are they that clueless?? Needless to say - I cried the rest of the night - finally crawled in bed around midnight & couldn't go to sleep because I was so hurt by how our closest friends could not even "Offer" their assistance...assuming that I am dealing with everything well enough to have the energy to do all that crap!
I understand that while my life is stuck living in CANCERVILLE, everyone else is moving forward in theirs. I understand that they have their own households to keep up with and children to be tended to. But truly - how am I suppose to repsond the next day when they both ask how they can "HELP" me!? If I say what I truly felt - I would be left with very little company - as no one else, not even our families (hubby has 5 siblings, only 1 has a child still at home), will come to our house to visit - I am expected to load 3 kids and a very weak husband - drive 40 minutes to visit them, just to drive back 40 min. - all the while nothing is being accomplished at MY house. do I really have the time? Do I really want to do that? NO, NO!! All anyone wants to do is take my hubby to his doctor appoinments...this is not helpful...I need to be there to know what the doctor says, make note's for future reference, and ask any questions that may be pertent to my husband care at home and in the future.
None of this make's any sense to me...this is "why" I refuse to call and "ask" for help!!
If you are still here and reading this...what have you found to work for you? How have you found the best way to get friends and family involved? Is it best to just leave everything as is? I refuse to say anything offensive....but I feel like that's all the only choice left...not an option.
My biggest enemy - is sleep - as long as I am awake and busy - I am not thinking about life BC (before cancer), when I do go to sleep - I sleep!! But just never feel rested...surely that isn't related to the fact I run at a high speed during my waking hours - and don't get the amount of sleep I truly need...no, don't think that's it...can't be...gosh that would mean I don't have super powers!! ha!ha!
Now I wonder if this is how it is now...how will I be able to cope and keep up if my hubby does go bedbound? It's afear, because I know the reality of his disease...I haven't given up hope...and pray more times a day than I thought ever possible...but really, how will I care for my kids? I keep questioning if I am really capable of giving my husband & children the care that each one so deserves.
Okay...I am done...I hope someone has some suggestions, understanding, or something to offer...sorry to have made you concentrate so hard on keeping up with how I get off topic....but at this time of morning...the thought process is not always in my favor!!
Thanks for any input, suggestions, and/or support you can offer....God Bless us ALL!
DH dx 11/12/2008 w/ Glioblastoma Multiforme