| Joined: Nov 2008 Posts: 35 Contributing Member (25+ posts) | OP Contributing Member (25+ posts) Joined: Nov 2008 Posts: 35 | Has been recommended and will be deciding soon whether to do it or not. Physician has recommended it but just not sure we should do it. Are the nurses and physicians on-call or do they show up randomly? Will they still allow my mom to go to an outside clinic for integrative therapy and acupuncture? I think my dad and I do need the help at home in taking care of mom but at the same time we have not given up hope! Moms cancer has gotten to her left lung and lower spine. She has a lot of pain and has a tough time standing. I still have hope for her!
CG to mother. Diagnosed with SCC August 08. Surgery Sep 08 to remove right mandible and replace it with fibula from left leg. Also neck dissection with one pos. node. Rad/Chemo with cisplatin completed Nov 30, 2008. Passed away Dec 15, 2014
| | | | Joined: Dec 2003 Posts: 2,606 Likes: 2 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Dec 2003 Posts: 2,606 Likes: 2 | Nick,
I'm sorry to hear the news. This is a brief quote from the California State Attorney General.
"Hospice care is designed to comfort and support patients and their families when the patient can no longer benefit from cure-oriented medical treatment. The typical hospice patient has a life expectancy of six months or less. While hospice often is understood to be a "place to go when you are dying," it more typically allows a dying patient to receive care at home surrounded by family surround a person in bed Hospice care is designed to comfort and support patients and their families when the patient can no longer benefit from cure-oriented medical treatment. The typical hospice patient has a life expectancy of six months or less. While hospice often is understood to be a "place to go when you are dying," it more typically allows a dying patient to receive care at home surrounded by family and friends.
Hospice services are provided by a team of trained professionals - physicians, nurses, counselors, therapists, social workers, aides and volunteers -- who provide medical care and support services not only to the patient, but to the patient's family and loved ones. The care addresses the emotional, social and spiritual impact of the disease on the patient and the patient's family.
As the primary health insurer for people age 65 and older, the Medicare program in the Social Security Administration offers certain hospice benefits for end-of-life care. Check with the federal Social Security Administration and your health insurance plan."
Two years ago, I was under hospice care. They provided many sevices such as a Chaplain, Social Worker, cleaning services. I was at a point I could not eat or drink and my digestive process had completely shut down.
I only share this is an example of one scenario. Somehow, I'm still here. I'm not saying your mother will be the same, but, please, don't give up hope. As far as other "treatment" if you approach it as palliative care, it would have to go through the hospice organization, as they will be paid a per diem amount, based on level of care and services. My Agreement included a place for me to sign that said I would not pursue any treatment other than palliative care.
I hope this helps some. My heart goes out to you. I had to make the same decision with my mother in 2000. It wasn't easy and she never felt it was time. I believe she would have benefited by seeking hospice care sooner.
Best wishes.
SCC Stage IV, BOT, T2N2bM0 Cisplatin/5FU x 3, 40 days radiation Diagnosis 07/21/03 tx completed 10/08/03 Post Radiation Lower Motor Neuron Syndrome 3/08. Cervical Spinal Stenosis 01/11 Cervical Myelitis 09/12 Thoracic Paraplegia 10/12 Dysautonomia 11/12 Hospice care 09/12-01/13. COPD 01/14 Intermittent CHF 6/15 Feeding tube NPO 03/16 VFI 12/2016 ORN 12/2017 Cardiac Event 06/2018 Bilateral VFI 01/2021 Thoracotomy Bilobectomy 01/2022 Bilateral VFI 05/2022 Total Laryngectomy 01/2023
| | | | Joined: Nov 2008 Posts: 35 Contributing Member (25+ posts) | OP Contributing Member (25+ posts) Joined: Nov 2008 Posts: 35 | The other treatment I take her to I am comfortable continuing to pay out of pocket for it. I also take her to acupuncture. I just need to ensure they will not stop this.
CG to mother. Diagnosed with SCC August 08. Surgery Sep 08 to remove right mandible and replace it with fibula from left leg. Also neck dissection with one pos. node. Rad/Chemo with cisplatin completed Nov 30, 2008. Passed away Dec 15, 2014
| | | | Joined: Nov 2008 Posts: 35 Contributing Member (25+ posts) | OP Contributing Member (25+ posts) Joined: Nov 2008 Posts: 35 | How closely do they monitor us? How often do they come over?
CG to mother. Diagnosed with SCC August 08. Surgery Sep 08 to remove right mandible and replace it with fibula from left leg. Also neck dissection with one pos. node. Rad/Chemo with cisplatin completed Nov 30, 2008. Passed away Dec 15, 2014
| | | | Joined: Dec 2003 Posts: 2,606 Likes: 2 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Dec 2003 Posts: 2,606 Likes: 2 | I'm not sure if they would monitor it, but if Medicare/insurance found out, they would stop paying the hospice agency.
I had a nurse stop by weekly.
SCC Stage IV, BOT, T2N2bM0 Cisplatin/5FU x 3, 40 days radiation Diagnosis 07/21/03 tx completed 10/08/03 Post Radiation Lower Motor Neuron Syndrome 3/08. Cervical Spinal Stenosis 01/11 Cervical Myelitis 09/12 Thoracic Paraplegia 10/12 Dysautonomia 11/12 Hospice care 09/12-01/13. COPD 01/14 Intermittent CHF 6/15 Feeding tube NPO 03/16 VFI 12/2016 ORN 12/2017 Cardiac Event 06/2018 Bilateral VFI 01/2021 Thoracotomy Bilobectomy 01/2022 Bilateral VFI 05/2022 Total Laryngectomy 01/2023
| | | | Joined: Jan 2013 Posts: 1,291 Likes: 1 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Jan 2013 Posts: 1,291 Likes: 1 | Sorry to hear about your mom's condition. Get the number of local hospice service and just tell them your situation and they will provide the assistance to evaluate your specific situation and offer options, hospice or otherwise. No cost and no obligation and these folks are the experts in this subject area. Good luck. 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 | | |
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