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BarbBrooklyn Asked May 2022

End-of-Life Checklist: Is there anything you'd add?

A dear friend's mom is 101 and has recently started refusing food and liquids. She probably weighs 85 lbs normally and has lost 3 pounds in the last week.


 


This dear lady is on Hospice, is at home with a 24/7 Home Health Aide. I made up a list of things that I think my friend should think about/have ready (she lives an hour away by subway).


 


Let me know if there is other stuff you would add to this list.


 


Dear M:


 


I hope things are better today. I have a couple of questions that I think you want to think about before things happen.


 


1. Is C (Home Health Aide) certified to ADMINISTER meds--in other words, can she give your mother liquid or injected morphine or will you need to be there to do that?


 


2. If something untoward/emergency happens, Hospice, not 911 gets called.


 


3. Have a "go bag" by the door--toothbrush/toothpaste/deodorant/couple of pairs of spare underpants/tee shirt and something to sleep in. If you get stuck at mom's for a couple of days, this will tide you over until someone can get stuff to you.


 


4. Get a spare phone charger with a plug at the end and/or a battery pack (also with charger) to keep in the go bag.


 


5 Make sure you can tell folks (us) who has keys to your apartment if we need to get you stuff.


 


6. I hope that this is all stuff that you won't need to know, but I always find being prepared takes some of the angst out of any situation.

Weewee071859 Jun 2022
Hello Barbs: Well, I wish I knew half of that list that you’re giving your friend because I didn’t know much about hospice. I knew it was at the end of life, but I didn’t my mom would pass in two days from getting home from the hospital Getting welding in a chair. 🥲. Just sleep on an uncomfortable, crappy, hospital bed at her apt. I admistered her Comfort meds and she was off all her other medication. My mother had fourth stage severe COPD. She couldn’t breathe anymore. It was her decision. The morphine relaxed her lungs so she could breathe. I just wish the medicine could’ve been started sooner in lower doses or something. Idk. I’m just heartbroken.

I wish you the very best with your friend and her mom. But I’ll tell you, it was really nice being with her at the end. Because there was a lot of fun times two along with sad times.

CoopHeath May 2022
I would add here- assign a #2 goto. THIS person would be who steps in to help #1 should their loved one pass.
There is nothing worse, in my opinion, than being the person caring for their loved one passing and then having to be the caretaker of all the rest of the family/friends etc. This #2nd person can do that. Answer questions, give pertinent information, and deflect any additional stress to your friend.

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BarbBrooklyn May 2022
Home Health Aide is provided through Medicaid, not private hire.

My experience with my own dying parent is based on NH care. We had an amazing level of support there; RNs, aides and med techs who'd known my mom for almost 5 years, plus hospice folks.

My aunt died at home, with only her son available to administer morphine to his mom. He killed himself a year or so later.

I want to avoid my friend feeling the guilt that I've witnessed in spouses and adult children who end up feeling that they've killed their loved one.

The good news is that this dear 101 year is eating and drinking a bit as of this AM.

Grandma1954 May 2022
About the meds.
If the HHA is private hire they can be instructed to give medications they do not need to be licensed or certified. (But check your State regulations)
(and TBH with the amount of meds Hospice leaves it is almost impossible to kill someone with an overdose.)

Hospice has TRAINED Vigil Volunteers. You can ask for one to be there with mom and they will work in shifts. They can stay until you arrive or they can stay with you. They are trained to support the patient and family. The goal of Hospice is care and comfort this includes the goal that no one dies alone.
The Volunteers though can NOT administer medications nor can they do "hands on care" other than maybe light hand/ arm massage with lotions or oils.

MJ1929 May 2022
Respectfully, #1 is none of your business. When someone is on hospice, family members are handed a box full of drugs including morphine and anti-anxiety that THEY are allowed to give to the dying person. The medications have the doses written on them like any prescription. Anyone doing the caregiving -- including the family members -- is allowed to give those drugs orally. No one needs to be certified unless shots are involved, and they shouldn't be.

The rest I would also suggest are not really your business unless your friend has asked for advice. I feel like you're inserting yourself in something that is a family matter.
IneedPeace May 2022
BarbBrooklyn is being a true friend. Most of us don't have much experience with the death watch, and some of the smallest things can be a great comfort - things that wouldn't necessarily spring to mind when your thoughts are consumed by your loved one dying in front of your eyes. I would have appreciated a list like this.
iameli May 2022
Find her address book and hope it's up to date. We had a hard time tracking down some of the people to notify.

AinSeattle May 2022
Small pack of hyper allogeneic wipes
Small comb or hairbrush
Small pack with cash or cards and identification and single house key -- trust me that you'll want something to fit in pocket or easily carried and not a purse or having to drag around the pack when leaving the room for a quick break.

BarbBrooklyn May 2022
Thank you all for the great ideas!

I saw my friend yesterday and she was FINALLY able to untangle a problem. The home health care agency was telling the Aide that she HAD to call if something untoward happened. Hospice of course was telling friend, "no you call US".

Turns out the HHC agency didn't know the patient was on Hospice. This is where having a SW from the local Area Agency on Aging come in handy, to sort this stuff out.
(((((Hugs)))))
BarbBrooklyn May 2022
"Had to call 911, or she would be fired".

Friend is glad that got straightened out!
Midkid58 May 2022
I agree with the narcotic administration. I do think it has to be a family member or medical person. Esp if it's injected, which, actually I don't think is very common. Dad had morphine by mouth, round the clock. His Valium was in an ointment and I remember rubbing a dose into the thin skin of his forearms. Then I'd kind of work the remainder into my palms. After doing this a couple times and having a VERY pleasant afternoon with dad, I found out I was supposed to wash my hands after. Duh.

Well, it made the Roadrunner cartoons we'd watch ever so much more pleasant.

I've spent MANY days in the hospital with DH when he's been inpatient. I always bring a huge book that I have already read before. I would take breaks and just go for a short walk--but for the most part, if I were giving mother a break, I didn't leave dad alone.

Barb--this was a very kind post and you are a kind friend!

GardenArtist May 2022
I used to keep magazines, extra socks and shorts/T-shirt or sweats (depending on the season), and nibblies.

A list of relatives and/or friends who need to know quickly might be helpful.   I've found that I often draw a blank when it comes to names and  numbers during stressful situations. 

A small pack of Kleenex can be helpful as well.

A legal cap pad is always with me wherever I go, as well as smaller note pads with cats or military planes as decoration.  Just gazing at them relaxes me. 

I think conformed copies of relevant legal data (DPOA, Living Will, etc.) might be a good idea, especially if decisions need to be made on the spot.

You're a good friend, Barb, and I think this person is lucky to have you in her life.

Llamalover47 May 2022
Barb: Add some nourishing and non perishable snacks and water in your Go Bag.

Beatty May 2022
What a good friend you are ☺️

A long cardigan or long wrap is my go-to item.

Even though heading to summer there (I guess?) it can be handy. I get very cold when tired sitting up late or miss a meal.

I always take something warm & cozy to be in for cold waiting rooms & hospitals. Being in Mother's home may be much much better & nicer for many reasons.

A long cardi + scarf also hides the pjs/comfort clothes you slept in from other visitors & medical staff (if this is a concern).

polarbear May 2022
A book to read to pass the time. You can't be focusing on the dying 24/7, you'd go mad. Perhaps, a journal or diary to write. And definitely some snacks and drinks.

AinSeattle May 2022
Cell phone pin/password.
Small whiteboard and erasable marker for notes/communication (necessary when one person can't speak)
Small pack of tissues


More when I think of it...

Jhalldenton May 2022
In your "go bag", protein bars, water, medication, anxiety drugs etc so that you aren't caught without any food. etc.

does the person that is being caring for have a living will/DNR/file of life etc they will need to locate that ASAP.

Numbers for clergy/spiritual caregivers for both your friend and mother.

Numbers for everyone they need to contact after she passes

Social Security will need to be contacted with the exact date of death. This is a stressful phone call in itself. Look that number up.
stephm1 May 2022
Just a note, in some states the funeral home or the medical facility automatically notifies Social Security.

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