Experiences/Suggestions??? Anyone?!?

[rblittleton]

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!

Brenna

[katoomba]

Oh Brenna!

OK, first let me say that I totally get it about friends/family offering to 'just call if you need anything". As for how to help in your current situation, maybe some of my advice can help.

1. Make a list of things you do daily and weekly. Post it on the refrigerator. When someone calls, go to the list. Respond by saying "yes, thank you so much! I really need some help!" Just from your post, I think walking the dogs would be an easy thing for someone else to help with. Maybe a neighbor wouldn't mind adding your grocery list to their trip. Picking up prescriptions is also an easy task that someone might be willing to take on. Perhaps another family on the soccer team can handle carpooling your kids to games or practices once/twice a week. Folding laundry? Preparing a meal once a week? Perhaps hubby's friend can sit with him while you take the kids to a game. I found that breaking it down into small items really helped.

2. Call your husband's doctor and keep him informed of the latest developments. Call your insurance company too. Maybe your coverage allows for a daily/weekly in-home nurse visit to help your husband's effects. Especially if/when he becomes bedbound. Maybe one of those family members should start coming to the appointments too. It might open their eyes to what is going on with your husband's care.

3. I know you want to be there for everything and are trying to make your kids lives as normal as possible. Living in Cancerville changes all of our ideas of how life was supposed to be and we have to adjust our expectations. Why don't you try asking your kids if they want to help? They may surprise you. Don't think of them as chores, just a family pulling together. Maybe they won't fold the laundry they way you want but it will get done. They might feel better knowing they can help. Kids can amaze you.

4. The next time your family wants to see your husband, be honest (not rude) and just tell them he is getting too weak to make the 40 minutes drive but that he would really love a visit.

5. Is there an 'organizer' in the family? (besides you!) There is a website (I think it is called helping hands) that has a calendar that lets people sign up for things that you have put on the calendar. If someone else is in charge of it, they can sit down with you and find out what is needed for the next week, month, etc... If you start listing off all of the things you need, it might help others to understand.

I really hope at least one of these suggestions help you. I know it is so hard.

My best,

Cathleen

[MarkC]

I didn't do this very well at first. Shortly before Sheryl passed away, it all came crashing down. I just couldn't leave her side. Everything went to hell. We called one of her best friends who is a real leader among our church friends. They mobilized and started working on all kinds of stuff. They got both of my cars to the shop, cleaned the house, unpacked some boxes, did the laundry, etc. For the last week of Sheryl's life, I only left her room if I needed a break. When I did break or nap, someone was there to sit with her. There was nothing in the house that required my attention. Someone was answering the door for me, someone was running the kicthen, etc. I couldn't have survived without these people. All I can say is, call someone who is the busybody, the bossiest, most connected person you know. Ask them to take charge and get more help in there.

[rblittleton]

Thanks for the suggestions...I feel that I have tried to do most (I won't say all) of the things that you both have listed. I just don't seem to get a response from anyone. It's like they make the offer because they feel that is what they are suppose to do...but are hoping I never take them up on the offer. This includes my family (very small - mom, dad, 1 brother), his family, and our friends. It appears to me that the only thing anyone is interested in doing - is how involved in making medical decisions - of which my husband is very adimant that no one but him and I will do (I agree).

Mark as for calling the "busybody, bossy, get things done person" that would be me!! Always has been...and from the looks of it...always will be! Just 2 months ago my sister-n-law called me and asked if I could go kick butt while her very new grandbaby was in the hospital and the doctors were stringing them along. So, what did I do? I left my husband (he was in better shape then), for 12 hours to go get some answers out of the Yahoo's (doctors) they had. Turns out, my sister-n-law and her daughter weren't asking the right questions...mostly because they had done no research (again done by me)!When a crisis occurs I seem to be the one person everyone relies on...I guess I just need to learn to rely on myself...and to place more confidence within to know that somehow - even if it's on my own - I will get thru it!!

The one thing I have learned - is no matter how bad of a day it is - never, NEVER say "I think GOD has given me all I can handle today...because it has been shown to me that NO, infact you can always handle one more problem. I have made this statement twice in the last 10 months...and at the end of the day...GOD has proven to me that I can handle more! Sometimes I feel that GOD is preparing me to become a single parent. I always relied heavily on support from my husband...and now that is gone. I am having to learn how to deal with all the crap that happens...along with the cancer burdens...in the end I know I will be stronger, but jeez, can't anyone see I am falling apart!?

Well, enough of this, I must go replace the o2 Sensor in my vehicle...so that it will pass inspection next week! Them men in my life would rather pay to have someone do this to their wive's cars...but can't see that I can't afford it!

Have a good day!

Brenna

[JBaker]

Brenna,

I am getting into this a little late but hope I can still offer some sort of perspective to help. Cancer does really sort out those that follow thru on their pledges and those that are just full of hot air and no follow thru when the going gets tough. One major thing I learned in this walk is when it comes down to it we are all on our own no matter what. I am thankful for all may parents have done for us during my wifes passing and all they have done in the three yrs since but still certain things I wish I could do they will not always cooperate on things I would not think they would have any issue with, but they do not always assist when needed. Again we are on our own to figure it out and to do it all on many days. The days of "What else could happen" God does have a sense of humor and can add things on we would have never thought about but he can bring them up to be something else in which to deal with. I have mentioned prior friends of ours came to our house after my wifes cancer had gone to her brain and the friend made that "what else could happen" I took three hrs freezing my tush off the next day (Late in January in mid michigan) on a backhoe digging a very large hole to bury a neighbors horse that died (old age, 36 yrs old) two day after they had left for the south for a winter getaway. So yes it can always get worse so do not tempt God to step in and prove it can be worse.

As far as how to get others to assist in the simple household chores...Just do the best you can to distribute chores to those you can count on for non critical things as others have suggested. When it comes to the dogs and crates and fecal matter of theirs and unfortunatley your husband remember the old 80's bumpre sticker of "Shit Happen's!" That is about all that can be said of it. Yes cancer sucks of how it takes so much as steals from us those that we love, let alone the loss if innoscense lost by us spouses and our children that are watching their parent die and know they will never get to know them as we at least have.

As always wish I had more to offer to you, but just know you are among others that walk in similair shoes and can relate to your position one way or anohter. Please take care and if possible take time to smell the roses for a short moment too. For your and his family, screw it and let them drive no darn reason for you to take all the responsibility all the time. For me, we also lived 45 miles from family...on the drive both ways our children rested along with ym wife napped the whole way, all while I had to stay alert and drvie. When we get home getting boys out of car and then wife out of car and up several steps from garage into home and rested sitting comfortably. Then more work for me...walk both of the dogs, unload car from whatever crud we got or took with us to visit family. By the time getting those chores done I am whipped out and then the boys..."Daaaaad" something or another and wife needing something. Never a time to rest.

Just hold on for someday it will change and not for the better. Certain burdens will be removed from your shoulders to be replaced by different but equally crappy load.

Jim

[MarkC]

it amazes me how people can be so cold. the majority of our friends were like that. it didn't help that we had cut ourselves off from them as Sheryl started getting sicker. I was actually very surprised when people showed up to help. I was pretty much at the bottom and thought nobody gave a crap about us. I am not a religious man, but I do understand how a functional church should work. at the risk of putting to fine a point on it- your church is where the real help will be. maybe you could call the pastor/minister directly and have him put the word out.

[msharpe]

Brenna,

I so feel for you. I remember having one of those days during the first year of Gavin's diagnosis.

-I like the idea of checking with your insurance about seeing if any home care is covered. It sounds like besides help, you need a bit of a break for yourself as well.
-Do you have a church family? If so, that would be the place to start for help. At least that was the case for our church. Ask them for help with meals, yardwork, even financial assistance if needed.
-I agree with not wanting to burden the kids with more chores. I always felt uncomfortable when a neighbor would mow our grass because I would think, "I have an able-bodied teen-ager whose job is to mow the grass." Then someone made this point: the kids are going through the same traumatic circumstances and should be given help when possible as well.
-I wonder if your friends are so used to you being the one to help out, the mobilizer, that they don't realize that you can't to it all. That doesn't excuse them though that's for sure. Pick a close friend, have a heart-to-heart, and be specific about what you need. Ask her up front if she can help and what she can help with. Go down the line until all bases are covered.
-As for the sleep thing, I don't have any suggestions except to say that it might help if you can convince your slacker friends and family that you need help.

Wishing you well.
Maria

[frank23]

Brenna,

I just got to reading your post now. I continue to struggle with the same issues less two kids and two dogs. (My 6 year old son is still wondering why we can't get a puppy - some day I'll be able to give him the right explanation) I've read all the suggestions and also have tried some of them, but the fact is there are just too many things that we need to stay ontop of as cancer spouses and can't be delegated away. Yeah the lawn can be cut, someone can go grocery shopping, or clean the bathrooms, but the reality is that we never get a break from the big hurdles or the real stressors in our lives. All of us have one thing in common - we just can't lean on our spouses for support to help us through to give us the strength to help them fight their battle. It's a real crappy catch 22.

Anyway, I'm sorry I don't have any suggestions to help other than to find a break and downtime one way or another. Please know that I can truly sypathize - if you change a few minor details I could have (and probably did) write almost the same thread. And I know others have as well. My point - even though you're feeling all alone and overburdened please take some sort of comfort that there are others in the same boat and who feel the exact same way.

Best of luck,
Frank