Things I learned about eldercare, family caregiving, and end of life

[brainwane]

My mother died this year, after a long decline in her health, and I was one of the main people who helped take care of her. (Here’s her obituary.) While caring for her, preparing for her death, and handling logistics afterwards, I learned a lot from online resources, various professionals, and friends. So I'm trying to pass on some things I learned by sharing them in a new blog post: Eldercare, Family Caretaking, and End-of-life Logistics: Stuff I Learned.

Topics:

You HAVE to take care of yourself: what happens if you don’t, the minimum you have to do, and checking for emergency levels of stress.

Changes to expect in the months, weeks, and days before death: read this free guide.

Checklists for before and just after death: a few free lists and workbooks to help you plan things and take care of logistics.

Wills, powers of attorney, and advance health care directives: start before you need them, and LegalZoom is fine.

Easy-to-eat food, and letting your friends help you: MealTrain, deliveries, and what food is easiest.

Hospital chaplains can do a lot: even if you’re not Christian, they can connect you to useful people and resources.

Patient advocacy (which means catching mistakes): the medical team will probably accidentally miss stuff unless you remind them.

Medical notetaking at appointments and the bedside: be a patient advocate, provide continuity of care, and prevent mistakes; make and bring basic records, and keep up during a hospital stay.

Researching specific treatments and how to perform at-home procedures: look up science and instructions by professionals so you can know what’s happening and how to troubleshoot.

Organ and body donation, and donating unused medicine: try to do paperwork before death, and have a Plan B.

Palliative care, hospice, insurance (including Medicare), and hospice facility eligibility: the doctors are giving you subtext you need to understand.

Delirium and persuasion: it’s hard to be with someone who’s losing connection with reality, but I have some tips.

Music for comfort: calming playlists can calm agitation, and be solace if you’re not there.

Books and blogs that helped me prepare for this: I recommend some memoirs and how-tos.

This was, at times, hard to write. Hope it helps. Please feel free to share it publicly and widely.

Comments

[princessofgeeks]

Thank you for this, and I'm sorry for your loss.

Thanks

[brainwane]

Thank you. Hope the lessons I learned can help spare some folks a little bit of the unpleasant surprises I had.

[eirias]

Thanks, this is all good stuff. What a public service to assemble this in one place. As I'm sure you remember it's incredibly disorienting to walk into this reality without warning.

There's another hospice wrinkle I want to mention, which is that while you're in hospice status, there are certain types of life-extending treatments that Medicare won't pay for. For example, going on hospice is not compatible with chemotherapy or radiation treatment for cancer, as I understand it. In general, they want you to call hospice and not 911. But stuff does come up. A couple of times during his final months, my dad was rushed to the hospital to prevent immediate death -- one example was when his oxygen tube became disconnected and he didn't have the strength to fix it before it turned into a respiratory crisis that required really high volumes of O2 for a week. This was considered an OK reason to call 911, but the hospital had to take him off hospice status for the time he was there. I only understand this dimly from the caregiver side and I'm sure you have a reader who understands the legal/administrative details here better than I do, but I thought it worth a mention.

comment on main post?

[brainwane]

I'm so glad it's helpful to assemble this in one place; yeah, I want to save someone even a tiny fraction of the disorientation I had.

Would you be open to sharing your hospice tip in a comment on the main post at harihareswara.net?

[fox]

I'm very sorry for your loss. The topics of your posts ring a large number of bells for me that were hung there during my dad's illness and final decline and when he died. I hope you're hanging in there and continuing to be kind to yourself.

Thanks

[brainwane]

My condolences on your father's illness, decline, and passing, and my thanks on your kind wishes. I have the same hopes for you.

I'm getting better at the whole being-kind-to-myself thing. Seems a lifelong pursuit....

[watersword]

♥

re: condolences

[brainwane]

Thanks. <3

[seekingferret]

I'm sorry for your loss. I really appreciate your willingness to share your experience.

thanks

[brainwane]

Thanks. I benefited from so many people who did the same, you know?

[ursula]

I'm so sorry. Thanks for gathering all of this and sharing your memories.

[4ofswords]

Thanks for doing this, dear friend. I love how much you prioritise sharing valuable information and advice. It has been an ongoing source of inspiration for me.

[j00j]

Thank you for this.

[ndrosen]

I read your mother’s obituary; please accept my condolences on your loss.

[gentlyepigrams]

Hugs. My mom died in January 2018 and a lot of this would have been really useful for me. Thanks for gathering it.

What a gift

[jesse_the_k]

to share all this info.

May her memory be a blessing.