Helping an 80 year old with Lung Cancer
As I've mentioned before, I am stuck here in Canada behind the border closure so my ability to travel is nil. I am trying to help my sister in California remotely as much as I can.
I have othing to offer but my sympathy. Hoping you are able to handle.
Sorry for your news. It sucks.
His town probably has a social worker that can facilitate care issues. If he is a veteran, each county is supposed to have a V.A. office to facilitate veterans' care.
If there is an estate, financial or property, have him and/or your sister see an elder law attorney
never heard of a town social worker that helps....the hospital social worker should be able to refer to local resources. maybe AARP could recommend something.
Don't most hospitals offer such resources these days - or at least offer assistance in obtaining them? At the very least they usually have a social worker.
I assume he was tested in a hospital - maybe just call the hospital's main number, explain what you're looking for, and see if there's a department that can assist.
Or hell, give us the hospital name and we can help googling them to see if it's a possibility..
ETA: oops. cross posted
Carers Council (or association) in the State, as well as Cancer Council for the State will also have loads of support personnel and online resources. Your Dad has probably already been given wallets of info with some flyers or booklets for all of the personnel above and in my post but he may not have gone through them yet, or may be overwhelmed.
I’m very aware that the US situation is not the same as our situation here, however your Dad will want to feel independent about a lot of his arrangements for as long as he can. It might be worth checking into various dedicated Community Transport arrangements (perhaps via Red Cross volunteers, or through the town etc) for treatments and other medical appointments. (That might allow your sister to meet him there, or you & her to join via Zoom etc when necessary)
Speaking from current personal experience, having someone else in the house for ‘mopping up’ duty - personal, and to clean loo/bathroom, change bed linen etc - cannot be overstated. Then there’s making sure hydration, medication, proper nourishment in small meals is all covered... I’m functional almost 1 week a month on chemo, and I’m ‘doing good’ and 20yrs younger.
For you: take a deep breath. Let it go. Take another. Let it go. Shake the fear out. Love and humour will bring you all together, and help find solutions. 
Your dad should be able to have a power of attorney and living will drawn up if he hasn't done this already. Both are legal documents. The power of attorney will give someone (usually a friend or a family member) the ability to access financial accounts, manage bill payment, and deal directly with insurance claim issues. The living will expresses his wishes regarding end of life issues (distressing to hear but a necessary precaution with stage 4 lung cancer) and should designate someone to make medical care decisions on your dad's behalf and most importantly obtain medical status information from doctors and other health providers. These are important documents for all of us to have even if we are in perfect health now. Some financial institutions will require their own power of attorney in addition to a more general document. Medical Offices and hospitals should be able to provide a living will form that can be filled out and filed with them. A good form for this is Five Wishes, which is available online for download and printing.
There is a Facebook Group called SOMa NJ Caregivers of Older Adult Support Group which is a terrific resource. I strongly suggest joining the group and posting questions there as they occur. This is very much a been there done that group which is very caring and helpful. Good luck.
There are people who consult on a range of elder care issues and might be worth a visit with your sister and dad, or a phone consult with you, if an appropriate and recommended one can be found. "Geriatric care manager" and "life care manager" are a couple of search terms.
Wishing you and your family the best in this always difficult situation, made worse by travel ban. You might check with Canadian or US agency to see if there's any "compassionate" exception available for you.
Meanwhile, thank goodness for phone, facetime, etc. Speaking from experience, i imagine your sister will be grateful for any help you can offer, including "just" being there for her.
i have heard that the american cancer society helps patients directly...one of their commercials said they gave rides to appointments for example....
I can't offer you a lot of help, but I can add anecdotal stories.
My husband died of lung cancer and it is indeed a battle to get through. I am now dealing with my sister's battle with brain cancer. While the physical things are just awful, significant for those going through the battle is the constant barrage of bills, sometimes not correct or even fraudulent. For example, "they" billed my husband for oxygen for two months after he passed away, even though I had them pick up the equipment two days after he died. I would have called it a mistake but they did the same thing the first time he was on oxygen. Shameful. It is so taxing when you can't really do anything to help, even when you are there all the time. Worse when you get upset because they are being stubborn--or maybe it's you who is being stubborn?
I stepped in recently and took over my sister's medical bills, because I had no idea what she actually owed and what she didn't. I am her medical proxy (power of attorney) so I have this right. We got two reimbursements today for bills she had paid that I paid again (total of $40). Also, I got a company to stop billing her since the insurance company said that she did not owe the money they said she did.
I guess what I am trying to say is that dying is hard enough, especially during COVID. Having to also deal with all this other stuff makes it nearly impossible. Anything I can do to help, please let me know.
marylago said:
I guess what I am trying to say is that dying is hard enough, especially during COVID. Having to also deal with all this other stuff makes it nearly impossible. Anything I can do to help, please let me know.
Thanks Mary (and thanks to everyone). This sort of thing is exactly what I am worried about. I have been researching "Patient Advocates". They seem like they might be able to help with some of this but selling my Dad on the idea is proving challenging.
Klinker said:
marylago said:
I guess what I am trying to say is that dying is hard enough, especially during COVID. Having to also deal with all this other stuff makes it nearly impossible. Anything I can do to help, please let me know.
Thanks Mary (and thanks to everyone). This sort of thing is exactly what I am worried about. I have been researching "Patient Advocates". They seem like they might be able to help with some of this but selling my Dad on the idea is proving challenging.
Yeah, I know about that! Again, who is being stubborn? Making a little joke, but it is very frustrating.
Speaking from the other side, I don’t realise when I’m not actually ‘myself’ until I’m better and can look back. Learning the very subtle clues is very slow, and sometimes indistinguishable from my migraines, my backaches, or my brain injury overload - or just plain ageing. That’s why I’m trying to get D in carer-mode to help me ‘together’ not ‘in place of’.
we’ve set up a Family Board Meeting time once a week, to compare diaries, meetings, talk finance, medications, try to plan menus, exercise plans, transport, chore schedules, etc. During the week, I’ll check on things making little town cryer ‘announcements’ from a service department (Logistics, Catering, Sanitation etc) so he doesn’t think I’m suddenly changing plans on a whim just because he’s focused on what he’s doing. This last approach - playful but practical - has really helped his logical mindset understand why we need a team approach to some daily things I’ve just always done.
I broke a large jar while washing dishes the other day while he was zooming. I screamed for help (I wasn’t very stable on my feet but needed a medicine glass under all the dirty dishes). He didn’t excuse himself or even ask what happened, just kept going for 40 mins while I was surrounded by teeny shards. Yep, I had to clear it all.
I don’t chop veg now if I can avoid it (I prefer to buy fresh, and prepare food myself). My supermarket has some neat fresh veg shortcuts for microwave cooking (I don’t microwave), and I use those: diced pumpkin, carrot and celery sticks, ‘bolognese’ veg mix; baby potatoes &butter ready to roast, chopped shallots, etc. With Click & Collect or online shopping, your dad can feel more in control of some of this routine stuff.
Sorry for going on. Figured it might help him to feel stronger for longer, knowing how to conserve energy. I can’t begin to tell you how grateful I am for the Cancer transport. To not have to think about where to put my feet in the car, let alone what the traffic is doing. Not having to park, then walk to the foyer...we have a special entrance, and if necessary an escort to ensure we don’t get lost or stumble.
marylago said:
Yeah, I know about that! Again, who is being stubborn? Making a little joke, but it is very frustrating.
Since your Dad is California try contacting The California State Office on Aging https://aging.ca.gov. There is a link for each County's Office on Aging Information and Referral. This is where you should be able to find direction for services including private Geriatric Care Managers.
in my experience the job of a patient advocate is to spin the situation to prevent a lawsuit...I've tried a few times at various facilities...2 human hospitals....and I took my cat to a highly recommended vet in Monmouth County for cancer care. After the biopsy, I was told I could have a consult with the oncologist by phone (pre covid) for $100. It was around Christmas. I was expecting answers...but was just told that the oncologist couldn't tell me anything about my cat because she wasn't treating him, she could only tell me in general about their facility.....how they could even think that was appropriate is just bizarre. They wasted valuable time I could have been pursing active treatment by scheduling a nonsense appointment. To make it worse, they were starting to refurb their equipment the next day and pushed me to send him 3 hours away by himself for treatment at their sister facility.....I found a place in Clifton that could so the same treatment. It was clear, they didn't have the patient's care in mind...only their profit and the patient advocate backed the vet up.
I was supposed to be getting in home help, about 6 hours per month. The worker didn't show up half the time, fell asleep the other times, and whined they didn't know how to follow the service plan (signed by the worker and the supervisor) when I bribed them with candy to stay awake. The patient advocate supported the agency/workers. The one person quit and moved away. They assigned a new person who left a note for me at my unoccupied neighbors home....violating my hipaa rights, never called or followed up.....then said I refused services...and again the alleged patient advocate sided with the agency.
That sounds like something different from the services I am looking for. Thanks though.
My Dad in California was recently diagnosed with Stage 4 Lung Cancer. I am still kind of in the "I don't know what I don't know" stage of things and I figured there were (sadly) quite a few people here with practical experience.
Any practical advice would be greatly appreciated. I am particularly interested in finding someone who can help him manage his care, insurance claims and billings. I have heard that there may be professional (private) social workers who handle these sorts of things but I am not sure where to look for them.