Thursday, December 1, 2016

DIY Cancer Care (short version: not fun)

Breaking radio silence, I wanted to let some concerned friends and family know that we are OK.
We have had a series of disappointing medical appointments for Ernie, resulting in a lot of not much happening, and we are coming out of an extended paperwork-and-logistics crunch on long-term care for Ernie's mom.

Ernie's mom has late-stage cancer, and is medically considered beyond treatment (which she resisted for years anyway).

In the unfortunate event that you are going through something similar, here are some resources we've found useful:

- If you are doing OK, medically and financially, but starting to slow down a bit,  Meals on Wheels has been surprisingly helpful in helping elders stay independent in their own homes.  Not just food, but a daily visit from a friendly face, and in my grandma's case they were also able to call a designated number if she didn't answer the door.  (Which means family could visit when convenient, but didn't need to hover.)

- Long Term Care:
Illness is expensive, and so is long-term care. 
One website showing places to apply for food and medical help:
A lot of communities have other resources, such as private organizations or funds. A good local social worker should know a lot of them.

Medicaid can help with long-term care, based on financial and functional eligibility, they may offer anything from a few hours a week of light household help, to 24-hour care in a nursing home.

- Power of Attorney:
If a person becomes incapacitated, or just starts having trouble doing paperwork in a timely way, they may need to designate a trusted person to have access to their affairs.  (This is kind of like adding someone to your joint bank account - an untrustworthy person can really mess up your life.)
  There are lots of generic POA forms online.  You can X out sections that don't apply.  Consult a lawyer if needed.  A power of attorney is not the same as a will, and may not allow access to affairs or resources after a person dies.

Hospice: comfort care, including in-home or residential nursing:
(Ask your doctor what hospice programs they work with/recommend.  Generally, your doctor must confirm your eligibility (within about 6 months of end of life), but there are no limits to how long you can receive care.  The hospice coordinators or social workers can help you find out what's covered by your insurance.  They are incredibly helpful, compassionate, and well-informed. Even if you don't sign up now, they may be able to walk you through your best options and local resources.)

- American Cancer Society:
A good summary of end-of-life processes and symptoms:

What Happens When Someone Dies?
If you are young and lucky, you may never have been present at another person's death.   What do you do?
If the dead person was on Hospice, you call the Hospice main number, and generally a nurse will come out to handle things.
If not on Hospice, the death must be reported to the county Medical Examiner, usually by calling the sherriff's office at 911. Don't move the body until the medical examiner releases it. (Sometimes they just ask a few questions over the phone, depending who's there, but usually a medical person has to verify the death in person.)
  It's a good idea to make arrangements ahead of time (funeral home, body donation, or whatever), because there are limits to how long you can discuss these things, or second-guess the person's wishes, after death.  Funeral homes will provide a price list on request; both basics and extras can be expensive.  Although it can be depressing to contemplate, making decisions ahead of time is a huge weight off friends and family afterwards.

- Informal Social Support and Reciprocity:
  We owe a big debt of gratitude to the church family, friends, and neighbors, all of whom have been providing a lot of day-to-day help for Ernie's mom.  Most of them say that she has done the same for them, or for other friends and families they know.
  Most of the above programs, and many others, accept donations or volunteers. My gran'ma and I enjoyed donating boxes of fresh fruit from her backyard trees to Meals on Wheels; another friend enjoyed delivering meals by bicycle.

We all make our own beds, and lie in them.  There are worse things than toughing out a deadly illness in your own home, on your own terms, with daily visits from friends and family.
Not useful, in our opinion:
- sales websites promising to cure your cancer in a few easy steps (and turning the blame back on you if you don't follow their impossible steps exactly, or if following their steps caused other and possibly worse health problems)
- faith healers who tell a person casually over the phone that they are healed, regardless of medical circumstances, or any discernible divine intervention
- people who snoop or gossip about someone's situation without actually helping.

We occasionally have the benign problem of 'too many cooks,' where well-meaning people see a need, and try to do something about it (like "re-organize" or shuffle important papers).  But if it is not a task they can complete (often because it's not really their job), messing with it can make things worse.

One of the most difficult things as a care giver is to recognize when to leave well enough alone.
Being present, and listening, are often more important than bustling or effort.  Between Ernie's medical appointments and our physical distance, we're not able to be present as much as his mom might prefer.  So a lot of what we can do is by phone, fax, email, and second-hand.

I often wonder whether I'm doing enough, whether I'm doing too much.  I am in this as Ernie's proxy; I often talk to his mother more than he does.  And I may be stepping on toes.

There are a lot of emotionally difficult, physically uncomfortable things that happen when a person needs care. Everyone has their own opinions about how things ought to be done. I want us to hear about it if care isn't adequate - and I also want Ernie's mom to be allowed to make her own decisions as long as she is able.  Friendly nagging or insisting can quickly become harassment - or just add to the indignity and confusion of an older adult having to ask for help.

Between consenting adults, "No" means No.  Either the care giver, or the person receiving care, can decline if they are uncomfortable. (Physical, emotional, or time limits; inappropriate medical training or skill; or a private reason or personal preference are all adequate grounds for declining.)

There are specific legal and medical situations where a person's right to self-determination may be over-ruled.  But unless and until you are appointed to make decisions on someone else's behalf, that is not your job. 

I keep reminding myself that we are all doing the best we can - and not even the most perfect care can make a loved one immortal. 
Hold onto the love, compassion, and gratitude that brought you together in the first place.