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My brother and all the extended family live in CA where there are many resources. He is caring for our 85 year old dad, his wife who is on disability and his grandson who has autism and other physical disabilities. My brother was recently diagnosed with stage 3 cancer and is told he has 14 months to live. I'm trying to work behind the scenes to see if I can get my Dad into a VA home in Barstow CA so Dad will be near his brothers, sister, neice, nephew, adult grandchildren and daughter-in-law. I live in a remote mountainous area of New England and have met with many professionals who are unanimous in insisting that it is best to keep Dad in CA near the many resources and majority of family. He only gets $1,000.00 per month from the VA and never cared to save for his retirement. He does have Medicare. I will not be able to get any paperwork from my brother or sister-in-law as they under great duress. Has anyone gone through anything like this? How did you handle this? Respectful suggestions are appreciated. Thank You,

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It's a wonderful idea to find a place that's close to the family. And I'm impressed that you're addressing the issue now, and from a "global" perspective, i.e., all the various issues of staying in CA, inability to get documentation you need, etc.

I would like to emphasize though that your brother should execute both medical and financial powers of attorney, perhaps when he has some good days or has his short and long term care plans in place. Someone may have to make some decisions as the cancer runs its course.

I would also suggest that the family do two other things:

1. Reach out to Gilda's Club, which provides support and activities focused specifically for families dealing with cancer. In my area, the GC even had support groups for specific types of cancer.

2. Read the CURE magazine, either online, or get a subscription, free to those with cancer or their caregivers. There are a lot of good articles, ranging from technical to practical.

Begin to make plans for later stages when more help will be needed. Will it be at your brother's home? Will his oncologist script for in-home care? What foods can you consider that will provide nourishment as his appetite decreases?

If he's getting chemo, try to work out schedules with family or friends to take him to and from chemo, with plans for significant rest after any session. Same with radiation.

Create an area in the home that doesn't require going up stairs, which could become impossible to do as the cancer progresses. My sister moved down to the first floor and slept on a large and long sectional. We arranged end tables around her, with things she needed - phone, address book, appointment calendar, chapstick, meds, etc. I had friends help haul down 2 mattresses and slept on them at the end of the sectional, so I was always available if she needed help.

As the cancer progresses, movement becomes more challenging, so "hunkering down" in one area is best for the patient.

Either through Gilda's Club, CURE or other sources, learn about the various side effects and how to deal with them. One that was totally unexpected was what my sister identified as a "bacterial shower", although I think now that term isn't used. It occurred after her PICC line was flushed; some bacteria apparently entered the PICC line and was flushed through it, resulting in violent shaking and chills. It was frightening.

Being a nurse, she knew what was happening, and told me to rush her back into the infusion center where nurses administered Tylenol. Still, she shook and was literally freezing for about 1/2 an hour.

This was very, very unsettling; it's fortunate she knew what to do because I didn't.

Another important issue would be to find someone else, within the family or hired, to care for your brother's parents and the younger child with autism. With his own cancer diagnosis, it will be impossible for him to care for so many people.

I'm always sorry to learn of a cancer diagnosis, and hope that my suggestions can help you and your family on this unwanted journey.

But remember, 14 months is only a prediction; people can live longer, or perhaps not as long. My sister lived 6 months longer than her oncologist predicted.
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In rereading your question, I've focused more on care for your brother than for your parents. I apologize; your parents will obviously be very important. Have you contacted the VA yet to determine what help it can offer your father? I've found the VA Social Workers to be very helpful, not only for the primary patient but for the family as well.

I was even sent information on VA support for caregivers.

If you need VA assistance in qualifying your father for additional programs, the Social Worker could probably help, or contact one of the services organizations such as the VFW or American Legion.

What about your mother? Will she be remaining in the house? Where does the member with Autism live?
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I assume your brother is Dad's POA, it would be best to have that changed ASAP to someone else living near him, a niece/nephew or grandchild (providing dad is still competent to do so).
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Oy. Others above offer good suggestions...of course it is essential to get the legal aspects tended to for all involved. I would want to connect with a certified elder law attorney to make sure it is all covered...though the first and more important step may be to connect with the local hospice program who may be able to suggest resources, help with setting up the home environment and assist with support to the family through all of it. There also is something called Caring Bridge I believe, and another program called Share the Care. Not recalling specific details but I think Share the Care is a place for caregivers and has a calendar you can set up so those friends and family who want to help can see what you need done and when and can sign up to do it.
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Yes, definitely involve Hospice at the beginning; they can be a very good resource. We didn't realize how quickly the end would present itself, and the day that Hospice came, was the day my husband passed away.
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Is your Dad of sound mind? Or does he have dementia? Have you talked to your dad and would he be agreeable to moving into the VA Home? It would make things easier if he is on board with it.

Also, having Healthcare Proxy/Medical Power of Attorney and DPOA, for Dad with additional names listed would be good for someone (i.e. niece, nephew, adult grandchildren). other than your brother to have for your dad, so your brother can concentrate on himself, wife, and son. (And same paperwork for your brother.)
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