How do lifestyle factors and exposure to environmental substances affect our cancer risk?
by HubbyhasGBM on Fri Sep 21, 2012 02:46 AM
Hey all - this is partly venting and partly asking for your advice. My husband, who is on month 14 of a GBM diagnosis, has taken to inviting everyone he knows to come stay with us, and then he promises all sorts of activities - few of which he is capable of fulfilling, many which have expensive admissions, which is costly both to us, and to the guests. When the people come, or the activities begin, he gets momentary satisfaction, then must excuse himself because of his condition. I am expected to pick up the slack, and I'm at the end of my rope. Lately, his extravagance is not limited to inviting people - but also to demanding things that are really expensive and do not need to be done right now. I have been doing all I can to keep up with his guests and the bills for the past year, but lately, it has gotten completely out of hand as his condition worsens. His birthday is coming and he has requested gifts and home projects that, if purchased, would run somewhere around $13,500. As any of you GBM caregivers know, the medical expenses eat you alive, and the income, at least in our case, plummets. Plus, I am unable to keep up with my own job, so my income has dropped to near zero, too. It's almost like he is delighting in watching me have to say "No" to one, after another, after another thing--because then he can blame me for not being able to do them instead of owning the fact he has a brain tumor and that, as such, he has limitations. I also think he keeps signing up for more stuff because during his very limited awake time (6 hours/day) he is bored! I can fix meals for the guests when they arrive for pennies on the dollar. But he wants to take them all out to dinner - order the most expensive stuff, and then pay for it all with our credit cards. Then, before I have the sheets changed on the beds, he has invited more, more, more company. Quite literally, I am finding myself exhausted...and I am tired of wearing the black hat--having to say "No" all the time. It is also the position of "parent" in our now parent/child relationship. Have any of you found a solution? Am I overreacting from being exhausted myself? How can I keep our relationship positive when he pouts if I suggest we wait on some of these things, or decline guests? The further we go into debt, the more stressed I become. I tried to bring it up to him, and he said the stress was not good for him. (It probably isn't - but, frankly, it's not good for me either! How else can I get him to stop with the "Prince Me-Some-More" routine?)
I don't want it to go unsaid, I do love this man incredibly. Naturally, I want to give him all I can - and, especially now, I don't want to have to say "No" all the time. I need him to own where he is at, and appreciate "enough." And for him, no matter how many people come, not matter how much money is spent, it is never enough.
by karynk on Fri Sep 21, 2012 04:56 AM
Can you either head off the invites or talk with potential guests on your own, with out the hubby around, and end the party before it even gets started?
I had to do a lot of this a few years ago. I am the official party pooper - but then my husband does not have this sort of personality stuff going on. But I had to put an end to a whole lot of family stuff, because it all ended up on me...and I couldn't do it.
If at all possible to let the "guest," prior to them becoming guests, know that hubby's brain is not how it once was, and although you understand that no one would want to deny him a request....the reality is that this is very taxing on hubby and yourself. If that doesn't put an end to it, I would at least take the time to firmly state that all of your funds must go for his care and you don't have the finances to "treat" for expensive meals. If they get mad....so be it.
Making the caregiver the bad person, for having to say NO all the time, is something that I know all too well. Picking and choosing your battles, is where you are at, and I wouldn't start with battles with the person with the BT. I've tried that too - to about as much success as an arguement with a 2 yr old.
All else fails, I put extremely strict visitation rules into effect. Anyone had to talk to me before visiting, visits were all 30mins to 1 hr long. They had to excuse themselves regardless of my husband asking them to stay. And I pretty much took control over the finances.
Don't know if that's the type of suggestions you are looking for...but that's what I got. And I haven't a clue if what I just typed out makes any sense to anyone other than me....lack of sleep here.
-Karyn aka been there, done that....can't find the t-shirt :)
by herrmajo on Fri Sep 21, 2012 05:22 AM
When my Kevin was sick, I welcomed all the company that came, and believe me it was constant, the only quiet day was Mondays. While they were entertaining him I was able to get stuff done. As far as the expenditures, I would let the people invited know the situation that you just can't be spending as his health care is very costly. If they are truly friends my thoughts are that they wouldn't expect the big hooya anyway at your expense without you even bringing it up. In your situation most people would be bringing you meals instead of expecting you to make them meals. I don't know, but seems a bit messed up and I would be aggravated too. I guess at this point in time you are the ruler of the house and just need to put your foot down. The darn caregiver thing is a tough, tough road to hoe. Good luck to you!
by suzanne55 on Fri Sep 21, 2012 06:46 AM
I find myself not wanting to say to people that my husband is not himself, or that his mind is not what it was - I suppose because I don't want it to be true. But I have had to say it - and way lay his plans in some cases - because it is just too much. During one of the times when he was more "himself" I explained to him that I have to make the best decisions for both of us, and that he would have to trust me, and he agreed. Whether he remembers the conversation later I don't know, but at least I know it's been said and some part of him understands that I'm not just trying to be mean. This is so tough! Good luck, and vent any time!
by siblingof on Fri Sep 21, 2012 12:12 PM
by HubbyhasGBM on Fri Sep 21, 2012 09:05 PM
Thanks for all the responses. Here's what I have done: I have written a boundary email to all the relatives with the rules of setting stuff up through me first. That has helped, but the sheer number of people is still an issue. He's from an incredibly large family, so email is the only time-effective means of communication, and I'm not sure all of them read the mail.
Second, I recruited the hospice nurse's help in putting the brakes on some of these ideas. Still, his mind, when it is awake, is capable of going 10 million miles an hour - in directions I cannot predict, nor get ahead of.
It is a fine, fine line between allowing someone to fulfill their desires to the best of one's ability. It is quite another to allow a wreckless impulse-control-deficient person to wreak so much havok that it takes several people months, if not years, to recuperate from it. I keep telling myself that this, too, shall pass. And it will. Last night, I was just overwhelmed by it all. That was compounded when he told me this morning that one of his friends, who is an attorney, had taken his impulse to sue seriously and they talked last night by phone while I was still cleaning up the downstairs. Oh boy.... He wants to win a big settlement to pay for more, more, more.... I am responding that there is a beauty to enjoying what one has, however meager, and that more does not always translate to better. It's disconcerting to know my speech probably went in one ear and out the other.
Thanks to all of you who responded. I wish you all the best in your own journeys, which I know, firsthand, are riddled with hurdles, too.
by karynk on Sat Sep 22, 2012 04:09 AM
I forgot that I did get a lot of support from his medical crew too, but he was inpatient for part of it.
Hang in there dear...we will get through this....at least that is what I keep telling myself :)
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