Posted on 11/03/2013 7:14:31 PM PST by Tired of Taxes
This would be a ping list for survivors and caregivers to share information with each other on treatments.
If you are interested in your name being added to this ping list, please post below.
I have cancer again. This time it’s colon cancer. Invasive Moderately Differentiated Adenocarcinoma.
The tumor appears superficial (not penetrating beyond the intestine). I’ll have a couple pre-op sessions next week, then surgery around the end of this month.
Doc said he doubts chemo will be needed, or appropriate. We’ll talk more about it later.
My biggest worry right now is who will care for Hubby while I’m in the hospital. The stroke in ‘08 left him unable to care for himself. TriCare won’t pay for a nursing home. I’m checking with the VA, but that doesn’t look promising either. Medicare will pay for in-home skilled nursing an hour or so per day. He’s insulin dependent, so I think they’ll come in to administer each of his shots (morning, night and before each meal). I’ll have to prepare meals in advance, and hope he doesn’t gobble them up too quickly.
I really resent that after he served 21 years in the Infantry, pays for TriCare Prime to cover the health care he already earned, and pays for Medicare to cover what he’s already paying TriCare for, he’s not covered for one lousy week of respite care.
Oh, no, BB, I’m sorry to hear that you’ll have to deal with this monster again. It’s good that it was caught early, but you and your husband have so much to deal with already.
I had a short experience with TriCare when I was married and the husband worked for a military contractor. The coverage really was terrible, imho. Veterans should be treated much better.
Is there anyone you know and trust enough to check in on your husband more often?
I’ll ping the list to your post. Would you like a prayer thread, too? Just let me know.
BykrBayb has received some more news. A different kind of cancer this time around.
Please see Post # 221.
Prayer and/or words of encouragement would be appreciated!
Would you be able to use one of the private home care services, such as Visiting angels. I remember when Mom broke her arm, she needed care for a few nights while I was at work, and I paid for somebody from Visiting Angels. It cost me $270 dollars, but it was worth it.
Please keep me on your list. Very helpful information.
I’m very sorry to hear that but at least it sounds contained so it seems you’ll make a full recovery. Both you and your husband are in my prayers. BTW, I know what it is like being a primary caregiver, it is tough work alone and now this happens. Do you have any children, siblings, etc. that can care for your husband while you;re recovering? If you get that monkey off your back, your recovery will be easier.
Thank you for the support.
Medicare gave me a list of Medicare approved places that would send someone to the house with skilled nursing care. After wasting most of the day comparing them, through phone calls and what I could find on the Internets, one of them revealed to me that the only skilled nursing care my husband might qualify for is a bandage change once a week, and even that - only if I can prove he’s home bound to the extent that it’s impossible to load him in the car and take him anywhere other than doctors’ offices, hospitals and church. If it’s possible for him to ride in a power chair while I do the grocery shopping, he doesn’t even qualify for an in-home bandage change. It doesn’t matter that he will have no caregiver during this time. And insulin shots don’t count as skilled nursing care. WTF???!!!!! I called Medicare back, and they confirmed it. No apology for having lied to me in the first place.
Meanwhile, one of the countless people I spoke with while wasting me time on the phone, told me Medicare patients with a caregiver are entitled to respite care (5 nights in a nursing home) every 3 or 4 months. She’s a case manager at the hospital, and sees patients utilize this all the time. So I called Medicare, again, and the lady told me that’s only for hospice patients. She was oh so understanding, and gosh her heart sure went out to me, but bottom line, no can help.
I got several leads to agencies and nonprofits that might help. I followed every lead, and all but one turned me down. The Catawba Area Agency on Aging says they might be able to give us a grant for assisted living. They gave me three facilities to check for availability. The first one couldn’t take him. By then, it was after 5:00, and my brain was fried. So I have two assisted living places yet to call. If one of them can take him, I might get help paying for it.
Meanwhile, I also asked about costs at some of the facilities I called. The cheapest one was $200 per night. If I don’t pay any of our bills this month I can do it.
I took in a pregnant feral cat a couple months ago. The kittens are two months old today. I was planning to keep them a little longer before getting Momcat spayed, and then release them. I’ll catch the kittens again later to get them fixed too, when they’re ready. Well, now I need to get Momcat fixed right away so I can put them all out before my surgery. I’m picking up a voucher for a discount on that today. I’ll get her spayed on Thursday. Does that give her enough time to recover before the 30th? I hope so.
Cancer sucks!
one of the countless people I spoke with while wasting me time on the phone
It's that way everywhere nowadays. You make a call, and first have to talk with a voice recording - right? Sometimes it throws you into a loop and disconnects you. If you can get past that recording, you get to speak with someone who gives you a half-answer that causes you to make countless other calls, sending you in circles. It might take multiple calls to get a full answer to your question. It's so frustrating.
It sounds as if you've found an option for your husband, albeit an expensive one. Yes, cancer really does stink.
Most of the people on the ping list don't seem to visit every day. I'm worried about a few. :-( But I'm hoping someone who's fought colon cancer will see the ping and your post and will offer some encouragement. Or someone who knows something about respite care.
Would love to be added to your ping list. Hubby had bladder removed in 2001 and has a stoma which I have tended to for 14 years. Last year he had the lower left lobe of his lung removed as it was cancerous. Now he has shadows on his left kidney and in his throat. Next month he will be 87. Despite all this, he has so much energy, cutting wood, planting and tending to his garden and helping me with household chores. I am so thankful to still have him after 67 years of marriage and have him so active and cheerful.
We keep the updated ping list right here on this thread.
TO ALL: UPDATED CANCER WARRIORS PING LIST
; AllAmericanGirl44; Armen Hareyan; B4Ranch; Balata; Ban Draoi Marbh Draoi; bayareablues; blueunicorn6; bonfire; BykrBayb; Cajungirl; Califreak; ConorMacNessa; cookcounty; CrystalD; Dacula; dadfly; Dick Vomer; duckbutt; Eaglefixer; es123409; fatfertile; FlyingEagle; ForMyChildren; foxfield; free_life; freemama; Gabrial; GILTN1stborn; Grammy; Grazie; HomersNose; huldah1776 ; Impala64ssa; Jaxter; jch10; jemckay19; johnsmom; JRandomFreeper; jtminton; JustAmy; kalee; katykelly; Lou L; MayflowerMadam; Mears; MrsFlyingEagle; My Favorite Headache; neverdem; njmaugbill; Nowhere Man; the OlLine Rebel; PastorBooks; Patriot777; petercooper; redleghunter; RitchieAprile; rjbemsha; SaintDismas; SeaHawkFan; Shimmer1; Smokin’ Joe; Squawk 8888; stonehouse01; SVTCobra03; Tired of Taxes; Tolerance Sucks Rocks; trebb; upcountry miss; wgmalabama; xzins; Yaelle
Oh my! What a lot you have on your plate. And what a blessing you both are for each other.
I wish somebody would tell me how to get respite care. Medicare is telling me the only way they’ll pay for respite care is if I put him in hospice and impose a DNR on him, so if he has any more medical emergencies they won’t have to bother with him anymore. Just give him the blue pill. I’m not putting him in hospice. I guess I’ll just have to put him out with the cats, and hope he can fend for himself.
For now, I will ping more specifically the caregivers on this thread...
Can any of you offer any more advice on respite care?
BykrBayb has an upcoming surgery, but her husband will need respite care while she's gone. (He had a stroke in '08.)
He's a veteran who served our country for 21 years. Medicare won't cover respite care unless he goes into hospice and signs a DNR. BB has been hitting a brick wall everywhere she looks.
Could hubby be all right with only 3-4 hrs. daily assistance? When my mother required 24 hr. care, my sisters and I alternated care with a home maker coming in 3-4 hrs daily, giving us a break we could depend on each day. It was a big help. She would bath her, tidy her bed and get her lunch and do simple household chores. This was all free.
Also have a relative in Mass. who has a hubby who has cancer and periodically he goes into a nursing home for a few days and his wife schedules all her appts. plus major grocery shopping and hair appts etc. for this period. Sounds like the respite care you described. I think if only you could find the right people to talk to, something could be arranged. Keep trying!!!
Hubby hasn’t been admitted to a hospital recently. Medicare, TriCare and the VA seem to consider this MY medical problem, not his. He’s been doing fine with a caregiver (me), and his health hasn’t changed, so they aren’t going to budge.
We have a couple appointments per day, every day this week. Except Thursday, when we have three.
I’m not done making phone calls, but I really need a nap.
Thanks for all the good advice and encouragement.
My husband is a military veteran who is not getting the care he deserves, because of @$$holes who share your attitude. We should not be required to give permission to kill him in order to qualify for custodial and/or skilled nursing care. Take your pro-death attitude elsewhere. It is not welcome here.
Wagglebee, would you please mop up the floor with this piece of crap. I’m busy this week trying to arrange for someone to care for my disabled husband while I’m in the hospital next week having a piece of my cancer infected colon removed. I do not have the time or energy to deal with abuse from dip$hits like this, who think disabled veterans should be denied medical care and even custodial care, for the “crime” of being disabled. This $hit$ucking slimeball even stalked me onto a completely unrelated thread, to harass me, presumably because I am the caregiver of a military veteran, who refuses to hand him over to be killed.
I don’t know who “thesligoduffyflynns” is, but I’m shocked by what he or she just posted on this thread. That was a direct attack on BB.
I just sent a message to the Admin Moderator asking for this thread to be treated as a type of Caucus.
Thank you. That was a special kind of low.
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