Information gathering as a caregiver. Is there a list of information I should have on hand for my FIL's care?

Been over a year since I was in that role - Dad passed away, but excellent suggestions for all the things you need to have on hand. 

Yes all the meds, the special needs, the hospitalization and surgery history (and outcomes)... all of their conditions... eventually you just keep everything handy. I had it all on paper printouts, just found it easier to pull out and give to someone if they needed it. Every ER admitter asked for meds and hospitalization history. 

My Dad had swallowing problems and had to have his bed at a 30 degree min angle even in the ER. I made signs for the walls and door of his room. The nurses are so busy and as shifts change, things can happen and sometimes they just don't notice. Such vigilance and attention to detail is something we all have to have. Preferences and routines are important too. 

I would only add, Keep a Log -all the time... Names, dates, phone nos, etc. ( Oh I see that someone else has mentioned this.) Yes, when, where who...You will need to refer to it. I had a notebook. (Ended up a whole stack of notebooks.) Kept logs of weight, water, what food ingested, nighttime wakeups, urine amounts, etc. etc....(This was at home also.) Which nurses were in his hospital room, any events that were important, what the Drs said... Not to sue but just to be able to remind myself and tell others what was going on with him.
I also thought it was necessary due to one family member who was a little mentally disturbed and somewhat dangerous. That issue is over now that he has passed. 

Many many jobs we have in this role. Bless all caregivers.

Staceyp13: You're very welcome! Yes, you COULD put it on a computer spreadsheet. Just make sure to back it up on an external hard drive in case it's lost. That way the external hard drive will have the info. Okay?

Thank you all so much! The information you have given is so very valuable and has eased a lot on my mind as to how and what to organize. Much appreciated!

All excellent suggestions. I would add a couple of things:

1) Test drive that POA at a bank. They all seem to fax it to a legal department. (My mother's POA has been declined 4 times last week because the wording does not give me authority "to open" a savings account separate from our joint checking. Also checking for the wording "to close" such as in the case of a matured CD)
2) If he served in the military, have a copy of his DD-214 and his dates of service.
3) Have a copy of his ID. (Going back to the POA, the reasons varied for the rejections)

List for FIL:
#1 All doctors' full names, POB, contact info and who may be allowed to consult with them, e.g, family member (pref) or friend.
#2 All bank information
#3 All insurance information
#4 All health diagnoses
#5 All illnesses
#6 All hospitalizations
#7 All medical equipment needed (bedside commode, cane, walker, rollator walker, magnifying machine if Macular Degeneration patient)
#8 List of all meds
#9 Two cassette cases for day and night meds
#10 All known food allergies
#11 All food and liquids that are needed for said patient
#12 Activity list
#13 HIPPA doc
#14 Prepaid funeral paperwork done and executed
#15 All known drug allergies

For yourself:
Name and address of current psychiatrist

springwell.com
Has a comprehensive, easy to type in info on your computer and print out and create a very useful caregiver workbook. Covers most things. I do not keep my financial info in this book, but with my child, and the rest is kept and can be updated as needed. Check it out.

Good, good answers! One thing, though, about DNRs: You will need one for out-of-hospital and one at the hospital that the person normally uses.

No one has mentioned a document that is truly beneficial and complete to have: The FIVE WISHES. This covers all the answers ahead of time which the person may not be able to provide once they are not able to answer for themselves.

"Five Wishes is America’s most popular living will because it’s written in everyday language and helps people express their wishes in areas that matter most — the personal and spiritual in addition to the medical and legal. It also helps you describe what good care means to you, whether you are seriously ill or not. It allows your caregiver to know exactly what you (the patient) want."

CeeCee

Abducted by aliens list.....

Excellent

All good and important suggestions. I created a notebook with the medical information GardenArtist suggests for Mom that stayed with her in her hospital and then rehab room. In the front I had a list of all of her medical providers and contact info, in the back the family and friend contact list. Then most of the sections suggested above. I included 2 daily sections where whoever was with her when there was contact with a doctor or important info from a nurse we would write it down including the info discussed of course. This way we could look back if we were thinking didn't that doctor mention this option...what did they say exactly about this problem and any of her 3 children could read up on those details that they missed. Another daily (well sort of) section for any of us or visitor to write down thoughts and observations as well as info about her day and how we thought she was doing. Amazing how often a doctor asks about this or when something started and how often it occurs and we can't remember exactly. The notebook also included pockets in the front and back where I keep several updated lists of medications to hand to people who ask for the list, especially in an emergency this comes in handy. The notebook now lives in a conspicuous place in the house so it can be grabbed in an emergency and goes to appointments with us. It has morphed a bit but the basic's are the same. She and I spent some time together in rehab decorating it and I included a picture of her in better times, it just felt more positive for her that way. I keep my own mirror notebook of sorts now with her info that I make notes in during and about all the phone calls etc I do from home (I live 4.5-5 hrs away). While this medical info notebook has her basic medical insurance info/copy of cards we made a separate one for her financial stuff since it isn't necessary or probably smart to have that so available to everyone or traveling with her in emergencies when we aren't around. But everything is available to each of us should we need to help out or take over. Copies of the legal paperwork is in the financial book though as I'm writing this it occurs to me that the medical POA and AD should probably be in the medical book.

The other info I would suggest that I haven't seen mentioned is the little idiosyncrasies, habits and things your loved one has and likes. What are some of their favorite treats, do they like sitting in their chair and watching the birds, do they love taking about their grandchildren, do they really dislike raisins, that sort of thing. It's probably a list you and others will add and subtract from as time goes on because these things can change but it sure is helpful especially down the road potentially when knowing these things rather than trial and error could be a big help for anyone caring for him. One thing I can think of for instance is my mom has been deaf in one ear most of her life so she has become skilled, second nature actually to behave as though she hears you and fully understands whats going on but she really doesn't. She now has loss in her good ear too and if we don't warn every new medical person and remind many about it she will go through an entire appointment saying yes to everything or taking her ques from them as they ask and answer the way they are expecting... Think about a new home health aid coming in and the little things you might "train" them on about your FIL in particular.

This may be slightly off topic, but how, or can, you convince the younger generation to attend to this "information" for themselves? You can pray that the older generation won't have to deal with all this for the younger generation but someone will have to; their lives could change in the blink of an eye. Nothing registers. Frustrating and futile!

Nurses and paramedics/rescue squad advised us to stick a list of Dad's meds (including dose and frequency taken) on the refrigerator just to have handy in an emergency.
(Ha - Leeharper I think we were writing at the same time!)

One very important thing you need is a list of medications and any medical issues he has and put them on the refrigerator in case an Ambulance were to have to come

Both my wife and I have our's in the computer and are with the three ring notebook I take along to either appointment. I summarize the appointment and note the B/P most times as well. My wife is in Assistance In Living and they always provide the info that is in their files. Allergies, surgeries, medical issues - dated and how treated, medications and their reactions if adverse, contact numbers and persons to call, updated frequently our history - even our obituaries - complete even to the music, speaker and ones to give recognition to and burial site (state and town). Anything else that may be of help - medical history may be most helpful when someone can not recall or is unable to be reached. My thoughts are: anything that maybe be of help to those who need to know - even the mortuary.

Yes, when I had to take care of my mom with onset dementia, I got a updated will, Durable Power of Attorney, and Durable Power of Medical Authority. I essential become the custodian of my mother's affairs. I also hired a geriatric care nurse to help develop a care plan for my mother.

Someone remarked earlier to go through the filing cabinets. Excellent advice.  Think about all the stuff you would give someone who was taking over your affairs.

In addition to all the medical stuff:

Deeds & realestate papers

Poa, dnr, end of life instructions, burial/funeral home info

All utilities records. You’ll need to take these over at some point

Home, car, life, medical insurance info

All banking info. If FIL is cooperative have him grant you co-signer status on checking & savings accounts.

Local services, heating cooling, plumber, electrician etc.

Put his soc # and birthdate on your phone. This has saved me many times dealing with my folks issues from afar.

All doctor and hospital info.

Put all this in a file such as a lawyers trial bag so you can throw it in the car. It’s amazing the stuff you will need at hand as you take over FILS care.

Great lists so far! We call all those things the “Abducted by Aliens” packet. It’s morbid, but in case something should happen to US, we want the next caregiver (my BIL) to not have to start over.
Additionally, I keep several copies of just his meds list. When we make a doctors visit or hospital visit, I just hand it over. So much easier than trying to remember what and how much of each med.

I have used a document called the "Beneficiary Book" which you can no doubt find online for a small fee. It lists all of the information that is necessary for your caregivers and heirs to have if you become incapacitated or die. Every time I leave town, I put it on my desk just in case! I am sure there are other equally useful documents you can use, but I found this one first and am very pleased with it, as are my two children.

You can also get current information by filing a 90 day fraud alert (good anyway, especially since the Equifax breach), then ordering the free credit report.

Transunion is less thorough than Equifax, but both are good b/c of cross checking.

If there are any credit cards, HELOCs or other liens for the last several years, you'll learn about them. Credit reports obviously are only for debts, so you won't know about the assets, but past tax returns are good sources for that.

Good answers here from all. Although you are not currently dealing with end of life concerns, this is a pretty all encompassing list...
https://www.agingcare.com/articles/preparing-a-letter-of-instruction-427686.htm

Even after my Mom passed I was still finding bank accounts in her name and brokerage accounts.

If you can, do an extensive search of the filing cabinets. Even the it might not be everything. I guess that generation lived then the Great Depression and just didn't trust banks.

Excellent suggestions above. I'd also make sure that you have info on any prepaid funeral plans, burial instructions, etc.

I did this when my parents first began traveling after Dad retired, and still do this, both for Dad and for me (although I'm always behind on my own medical history).

Later, when I took over the finances, I added that data, including banks, CDs, account numbers, etc. I needed to have a grasp on what they had, and consolidate it all. I forgot to add contact numbers for the holders of any financial accounts, so I still need to do that.

Stacey, in your situation, I would add the name of the agency providing caregivers, and its contact information as well as a general list of what care they provide.

You're wise and astute to anticipate that there someday probably will be a need for this.

These are the sections I had:

1. Table of Contacts (as there are several pages to the Medical History).

2. Personal and Family Information, with home address, phone, insurance card numbers, primary and gap coverage, religion.

3. Emergency contacts: name, address, phone and e-mail, for primary and backup contacts.

4. Current Medications, with name of script med and supplements, strength, dosage frequency and purpose.

5. Allergies, Medication Side Effects and what those effects are.

6. Current Medical Conditions.

7. Prior Medical Conditions (including issues such as complicated infections, MRSA, etc.

8. Pacemaker Technical Data, including Implant Date, Implant Physician, Manufacturer, Model and Serial No.s

9. Surgeries, Hospitals and Performing Surgeons.

10. Hospitalizations with dates and conditions.

11. Treating Physicians, with specialty designation, address, phone and fax numbers.

I later added a Family History list with cardiac and cancer issues, as so many of my father's family have cancer histories.

Each of the categories is on a separate page; I printout extras of some, such as the Med List, Pacer Info and Family History so I can just give the relevant pages to ER or new medical practitioners.

While everyone else is so smart to be suggesting the “big picture” legal stuff - my mind went to smaller things - but still important, I think.

Does your FIL have a “Do Not Resuscitate”? Beyond the legal Advance Directives there is a form for elders and people at risk that is filled in by hand and signed by the principal and their doctor. It is bright neon pink and should be readily available in the home for Emergency Personnel to reference.

I have been told that EMTs routinely look for them to be posted on the refrigerator.

I can’t remember what is all on the form / but if there isn’t a space - you should attach a list of prescription medications as well as any over the counter things he may be taking regularly. It would also be smart to list any allergies and if there is none, state “no known allergies” just to cover that base.

StacyP, I would consult with an Elder Law attorney. They can provide a package of personal documents that you may need, with medical release, Durable POA, Healthcare POA, Advanced Medical Directive and, even a Will, if that is advisable. Some people want to avoid Probate. An attorney can explain how that works and what needs to be in place. Regardless, of the amount of assets, a consult is invaluable so you know what to expect and how to protect assets legally. If you anticipate that he may ever need to apply for Medicaid, I'd see an attorney who is well versed in that as well.

Thank you both!

We are still unclear on his particular diagnosis, and more neurological testing is much needed. He is currently living independently - though we have an home health aid providing him assistance 20 hours per week.

He is certainly still capable with providing decisions for himself, though it seems he is declining at a stead pace and we are putting things in place so we are not "stuck" down the road.

Straceyp13, make sure your Father-in-law has assigned someone to be his medical and financial Power of Attorney, plus a Medical Directive in case he cannot answer for himself later down the road.

I see your Father-in-law has Alzheimer's/Dementia and is still able to live in Independent Living. Hopefully your FIL is still able to make some decisions for himself. If he needs legal documents up-dated, make an appointment when you know there is a good time during the day when he is thinking the most clear.

Things to think about, certainly:

HIPAA
financial POA and medical/welfare POA
at least the rudiments of his finances - even if you're happy to house and feed him at the moment, life is not free and at some point you will have to help him manage his money.

Is this a recent development? And do you expect to be his primary caregivers for the long haul or just until a different plan comes together?