| Joined: Dec 2010 Posts: 5,260 Likes: 3 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | "OCF Canuck" Patient Advocate (old timer, 2000 posts) Joined: Dec 2010 Posts: 5,260 Likes: 3 | Hi again. We do care and rant all you want. On a practical note you need help. I'm not being facetious either. There have to be some agencies in your area that offer a break and home health care. Here we have the CCAC. They come to your home (for free) and do all the things a nurse is supposed to - change bags give meds help with wound care etc... (also assess the patients) hopefully there is something similar available to you. I know your son is touchy right now that could be fear, or simply stress, but regardless its bad for both of you (Linda and you) to have to deal with it. I suggest doing some of it yourself. The shift work sounds like a great idea. that way you all get a rest. Also when approaching your son take him somewhere else - out for a milk shake or something - and have a man to man with him. being away from the situation will help keep your wife from fretting, and maybe make the situation a little more distant.
hugs.
Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
| | | | Joined: Sep 2008 Posts: 711 "Above & Beyond" Member (500+ posts) | OP "Above & Beyond" Member (500+ posts) Joined: Sep 2008 Posts: 711 | This has gone way beyond a nightmare. Michael is killing me. The stress level that he generates and his constant negativity is very unhealthy. I can only imagine what he's doing to Linda, but if I say anything to him or about him, Linda takes his side and gets mad at me, even though I know that he is stressing her out horribly. Last night we were having a hard time changing the ostomy bag and as Michael got angrier he was yelling at Linda to stop moving around. I mean really nasty yelling. He claims to be a Christian and reads the Bible every night but when things get to that point he starts cursing God and calling Him an "a-hole" for putting us all through this. I tried to get him out of the room last night so I could just take over and do it and he stormed out and Linda immediately got mad at me and demanded that Michael come back in. Maybe I'm wrong and I'm the one being an a-hole. I don't think so but then do a-holes know that they are? Btw, Michael is an adult, he's not a kid though you would never know it. I'm not religious, I don't really believe in any Supreme Being, but I have actually thought about going to see a priest. I have no idea how that would help but I guess it couldn't hurt. While this is a great forum and I love the people here, having this as the ONLY place where I can really say this stuff, well, it's good but I would like to talk face to face with someone. I can't talk to my family as they already6 don't like Michael and never have. I am totally lost here, I have no idea how to deal with this. Thank you all for being here for me.
Last edited by Deejer47; 09-09-2013 11:54 AM.
David R. 65 yr old male non-smoker, light drinker, stage 3 or 4, depending on which doc you ask, scc rt. tonsil, 2 nodes, 7 weeks radiation and chemo. No surgery. Teatment ended 3/20/08. PET scan 8/08 showed no cancer. And now, as of oct, 2010, caregiver to wife, Linda, with breast cancer. May, 2013, Linda diagnosed with stage 3 ovarian cancer. Enuf already.
| | | | Joined: Jan 2013 Posts: 1,292 Likes: 1 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Jan 2013 Posts: 1,292 Likes: 1 | How did the calls to the support groups go? Are you able to find a local support group for patients and families struggling through treatments?
Sounds like they may to go with you but at least you can get some support and guidance from others. Best to you, don
Don Male, 57 - Great health except C Dec '12 DX: BOT SCC T2N2bMx, Stage 4a, HPV+, multiple nodes 1 tooth out Jan '13 2nd tooth out Tumor Board -induction TPF (3 cycles), seq CRT 4-6/2013 CRT 70gr 2x35, weekly carbo150 ended 5/29,6/4 All the details, join at http://beatdown.cognacom.com | | | | Joined: Feb 2005 Posts: 118 Likes: 1 Senior Member (100+ posts) | Senior Member (100+ posts) Joined: Feb 2005 Posts: 118 Likes: 1 | Linda's doctor can write an order for home health care agency nursing to assess and instruct in ostomy care AND home health care agency Medical Social Worker to assess patient's needs. Locate a Medicare certified "Home Health Care" agency through Linda's hospital or doctor, and the agency can assist in getting the order written correctly so insurance will pay for these medical needs. While you may feel that you do not need an RN, I believe the insurance guidelines require that before an MSW is sent in to a home, a nursing assessment must be done. I have been out of the field for a few years so you will want to speak directly with an administrator with the home health care agency to get the current guidelines.
I am so sorry for your family's distress, but I believe there is help available for you. Make the calls.
Be well. Zenda 12/04 SCC Tonsil, Stage IV T3N2BM0. Mod RND, resect right oropharynx, free-flap, resect right tongue base. Erbitux,Docetaxel,RT X 33. 6/08 Mets lung, hilar lymph node:Carboplatin, Docetaxel. 2010 2nd clinical trial:lung clear, node stable. ORN,trismus,dysphagia. 8-10/2012 cryoablation,brachytherapy,cyberknife to lymph node. 12/12 NED. 6/13 Mets RLL lung: 8/13 cyberknife. 11/13 NED.
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