Help in a situation like this: Caring for someone with throat cancer

Call his oncology clinic tomorrow and ask for:
• The nurse navigator and the social worker / case manager. Say exactly: "He finished chemo/radiation yesterday, no home health since April 22, no training, I am the only caregiver, we need home safety evaluation, swallow eval, nutrition, and caregiver teaching." • Ask them to re-order home health with specific skilled needs: wound/skin care, teaching for feeding tube if present, nutrition assessment, medication management. Humana Medicaid often denies without specific orders.
2. Call Humana Healthy Horizons / Humana Medicaid Member Services — number on back of his card:
• Ask for Care Management. Ask if he qualifies for Long-Term Services and Supports, personal care, or a community health worker. • Ask for a list of in-network home health agencies that take his plan. Sometimes an agency closed the case and the order just needs to go to a new one.
3. Local resource building near your area that usually help even without home nursing:
• American Cancer Society Road To Recovery / Reach: 1-800-227-2345 — they can also connect to local patient programs, free rides, lodging, and info • Aurora Health / Advocate Health Social Work and Prevea / HSHS social work — if he is seen at one of those systems, they have financial counselors who know Medicaid • Aging and Disability Resource Center of in your County: — helps any adult with disability/illness find personal care, respite, meal programs, even if not elderly • Wisconsin Cancer Collaborative and local food pantry / meal delivery: often provide Boost/Ensure at low cost
4. If you are stretched thin:
• Make a one-page care sheet on the fridge: med times, allergies, oncology number, pharmacy, what he can eat, your name as emergency contact • Ask friends, church, neighbors for specific tasks: "Can you bring lunch Tuesday and stay 1 hour so I can shower/run errands?" • Keep your own water, food, and breaks going. Caregiver burnout is real after months of this.
— whoever your friend is, they are lucky to have you staying through the hard post-treatment part when a lot of support disappears.

ShellyGrayWings: excellent response to a caregiver needing exactly your guiding hand! Thankgoodness for a woman like you who cares about the Big Picture! Kudos to you!! Bette

@shellyk89
Just wonder how you’re doing. You’re a warrior who despite having a tough fight of your own still try to help others! I thought of you often and pray that you will have a break through all of this. Sending with love and hugs.

@dbamos1945 @shellyk89

Such a wonderful reply by ShellyGrayWings. So very kind to give such a thorough and practical response. You’re the bees knees, ShellyGrayWings 💕❤️‍🩹

@domingo1968 You are wonderful for looking after your friend and standing by him in this next difficult stage. I hope these comments have helped you get the help you need from various resources? ❤️‍🩹💕

@domingo1968, how is your friend doing? How are YOU doing?

Treated for stage 4 cancer with a 2mm growth at the base of tongue in 2009-2010. About 2/3 of the way through my radiation treatment in needed a feeding tube, because everything tasted like metal. 2 months after completion of treatment the tube was removed, but everything tasted just a little off and remained that way. In 2020 I was gradually losing the ability to swallow and by the end of 2023 I was back on a feeding tube and remained that way. I am 70 years old and retired in 2015.

@krisohlson I am sorry you are suffering through the late effects of radiation. It seems that our medical teams are not always great at warning us and managing all the late side effects. Did you work with a swallowing therapist when this was happening? Are you still doing followup scans? How are you doing dealing with these changes?

I am sorry, but I was called away the other day and did not finish what I started. Continuing:
How old is the person you are caring for? They need to exercise, specifically in the area where the radiation was used. In my case I have a limit for the amount I can lift over my head; 30lbs. Utilizing 5 mg Creatine Monohydrate before and after weightlifting nearly double my strength in all the mussels I exercise. Do not use Creatine if you do not workout. Ask your doctor. I waited too long to add Creatine to my workout (I wasn't knowledgeable). My mussels had gradually detireated over the years. Physical therapy may not be needed now, but if you wait you may suffer the problems I am having. The doctors at OHSU Portland told me there is nothing they could do to restore my swallowing due to the radiation I had in 2010. Get them moving. Go to a gym and establish a routine. Enjoy food and drink. Eat healthy. Travel. Schedule follow up doctor visits.

@sepdvm
Yes I did attend some swallowing therapies. This year I saw a therapist and they gave me some therapies, but they said there is really nothing we could do in my case. I have long finish followup scans. Well, I can't sing and talking is difficult. People have a hard time understanding me on the phone. This do to the radiation in 2010 and the second cancer surgery I had in 2020. I try to enjoy life, gardening, little traveling, small household projects. Thank you asking.