Tell me your one weird trick for loved one caretaking/advocacy

July 30, 2022 11:12 AM

Have you had a loved one fall catastrophically or even terminally ill and been a caretaker for them? What is the one thing you figured out along the way that you'd wished you'd know before it happened? Can be dealing with hospitals, insurance, the patient, self-care, you name it. Can be huge like "here's how I got the doctors to figure out what was really wrong" or small like "wow, I really should have noted their mobile phone password down."

There is a similar question but it is specific to end&stage Parkinson's. Looking for broader answers.

posted by rednikki to Health & Fitness (26 answers total)

Before it happened, or early on in the process?

Before it happened, everyone should have a password manager on their computer and phone. The fact that my husband and I had a password manager with a family account (and that I knew the password to his computer) meant I did not have to go through every bill, subscription, etc. and call/figure out how to pay them. I could log into everything important from shared accounts. He had some things that weren't in the family folder (relatively trivial ones, like his shaving product subscription) that I had to log into his computer for, but it made things so, so much easier.

Early in the process: start interviewing outside help before you need it. Maybe you won't be like me and hem and haw about getting outside help, but honestly, finding someone you're comfortable with and making them part of your routine (even for like an hour a week so you can go grocery shopping) means you have someone you can call and already trust when you start to need more.

Everyone keeps telling me to put on my own oxygen mask first. I find I cannot do that, but everything is so much better when I do. Schedule time for yourself, away from your loved one, while they are being cared for by someone you can trust to at least call you if something happens. I don't do it enough, and I know it's good for me, but it feels like cheating, or stealing. DO IT ANYWAY.

My loved one is not dying, so I'm facing a very long future of caregiving, and I'm in the fortunate position that he's slowly improving, at least relatively. But I would say to start recording things that you might want to remember. For me it's the recovery--I wish I had a recording of his voice a year ago to compare the improvement. But I know with my grandmother, I always meant to interview her about her life but never got around to it. Record voices, memories, etc.

Again, my situation is very different, and I'm so sorry you're going through this. Good luck.
posted by gideonfrog at 11:55 AM on July 30, 2022 [4 favorites]

POA.
Medical POA (which isn’t always recognized by doctors, but still good to have.)
posted by Thorzdad at 12:03 PM on July 30, 2022 [3 favorites]

Account numbers, expected monthly payments and how the payment notification is done -- automatic from a bank account or card, or an email notification that the payment is due, or a paper bill comes in the mail, etc. Critical usernames and passwords. A family member of mine really struggled when their partner was medically incapacitated for a few months, because their partner handled 100% of the household finances.

Something that helped us when that family member was hospitalized was taking lots of video on our phones. Doctors don't see their patients very often. It was helpful to the medical staff to see videos from a few months before the incident to see what the patient was like previously, and also video of general interaction with family and friends in the hospital. The comparison helped them see where the issues really were.
posted by erst at 12:03 PM on July 30, 2022 [3 favorites]

If it’s still possible, move heaven and earth to get your loved one to put legal ducks in a row: will, power of attorney, medical power of attorney, advance directive. We could not convince my relative to do this, and it was a fucking nightmare because an unscrupulous previously estranged relative showed up, convinced her that the person actually doing care was after her money (loved one had dementia by then so was persuadable), was appointed guardian, and proceeded to make decisions our loved one would have been appalled by. And there wasn’t a damn thing we could do about most of it (exception being my not losing the property I co-owned with the relative, but I needed to hire a good lawyer to do that and it was only possible because it affected me too).
posted by FencingGal at 12:05 PM on July 30, 2022 [7 favorites]

Recognize that you will always be behind the curve when it comes to medical issues and need for outside care. But the hospitals and nursing homes and home health-care agencies and doctor's offices can be invaluable in guiding you and cutting through the red tape, so find good ones and get them on your side. Then reward them, with cookies or lunch or whatever, when they really come through for you.
posted by DrGail at 12:34 PM on July 30, 2022 [1 favorite]

Move heaven and earth to have the loved one do the stuff they want to do ASAP -- meaning, I see all these movies, books, etc. that are like "Sick guy spends his last few months working through his bucket list!" and it's all super heartwarming...and in my experience the last few months are not at all like that. By the time my loved one thought "Oh, I want to do that stuff I always wanted to do" it was far too late to execute.
posted by BlahLaLa at 12:36 PM on July 30, 2022 [6 favorites]

I took care of my mom for 15 years as she slid into dementia. One thing I found helpful was a one page sheet with her basic medical information on it: her name, SS and insurance numbers, her doctors contact info and specialty, her ongoing medical problems, her meds, both prescription and OTC, and her allergies (Very important!)

This saved so much time whenever we had to go to a doctor or the hospital, I'd give a copy to the triage nurse and skip the usually thirty minute intake interview.

I kept a copy in my wallet, as well as in my phone and email account.

My sister and I also put together a "hospital folder," it had this information as well as a more detailed medical history. We also carried copy's of her insurance cards, her will, power of attorney, medical power of attorney, advance directive, generally needed for longer care hospitalization.

Also, take the advice others give you. Mom had to have home physical therapy, and the woman was an angel. She new most of the loopholes in the insurance coverage, and she was the one who suggested mom apply Medicaid. We waited a few years until we did, and should have applied when she suggested. I found out I was eligible to be her paid home care aid.
posted by Marky at 12:44 PM on July 30, 2022 [6 favorites]

Even if you/they aren't ready for medical power of attorney, get them to register you with their doctors as someone the doctors can share medical information with.

Also, there are nonprofits that provide funding to people with serious medical conditions, although there may be waiting lists.
posted by marguerite at 1:20 PM on July 30, 2022 [1 favorite]

Medical AND property/financial POA.
Do it.
posted by bookmammal at 1:38 PM on July 30, 2022 [3 favorites]

Call hospice before you think you need to call hospice (if able to afford it/etc). The hospice that were such a blessing during my Dad's last days told us hospice is almost always brought in too late.
posted by getawaysticks at 1:53 PM on July 30, 2022 [5 favorites]

If you own any property together, make sure you are Joint tenants with rights of survivorship (JTWROS) - not just "both on the deed." Make the time to change this if needed.
posted by Medieval Maven at 2:00 PM on July 30, 2022 [1 favorite]

My mom lived with a terminal illness for a very long time and then her meds stopped working (happens sometimes with cancer situations) and her decline was swift. She went from "Not doing great but we don't have a real timeline but it's it's months not years" to "she is no longer able to communicate" in a few days. So, depending on your situation, there may be things at different levels of urgency. Here are some things that were helpful for us.

#1 thing was that my mom had her shit together. She had a password list, my sister listed on her bank account, all the legal docs she needed as well as A BINDER of all the info about her house and her financial world that we would need

#2 thing that was incredibly helpful is that she told us what her wishes for her end of life was, both about how she wanted things to go (she did not want at home hospice, she wanted to go to a place and she had it picked out and had spoken to them) but also what she did not want. Sometimes dealing with someone with a terminal illness means running defense between them and the world, maybe handling their email, setting up an announcement email list for people who want to know how they are doing, keeping people who drop by from taking up their time, sometimes literally telling people she didn't want to see them. It's tough work but useful.

#3 the above becomes helpful when dealing with people who are working through their own grieving process about your loved one. Everyone has their own shit they're dealing with and I was actually surprised how inappropriate some people could be, from berating us from "sending her away" (hey buddy this was her choice) to standing in the driveway crying because my mom didn't want to see them. It's all really hard. Make sure you have someone you can talk to--for me this was my sister--who is either at your level or outside it on the "comfort in, dump out" circle so you can just unload about the fact that it's hard, without having to talk to your ailing loved one.

#4 do not feel guilty about taking some time for you and doing WHATEVER whether it's watching TV, going out to eat, having a few drinks, whatever. Hopefully you'll have some sense of whether you're in for a marathon or a sprint, but sometimes you don't. Take care of yourself.

So agreeing with other people above about medical and legal stuff. Also agree that hospice was amazing, both in the supports that my mother got when she was at home to the care she (and we) received in the facility she went to. Obviously they're not all like that but you have the possibility for better outcomes if you can put some forethought into it. Best wishes.
posted by jessamyn at 2:22 PM on July 30, 2022 [10 favorites]

There may be a post verbal period where they can be upset, restless, etc. Their favorite music, especially from much earlier in life, can do wonders at calming then when words cannot.
posted by history is a weapon at 3:34 PM on July 30, 2022 [5 favorites]

My mother had a stroke in December 2021, made a recovery, and then suddenly passed away four months later. I mention this because during the recovery time, she was very cogent and lucid and we had a rare opportunity to talk about what happened (and to get her affairs in order).

I would break down things this way:

In hospital

• Your #1 job is to advocate for your loved one. Keep good notes on everything medical that you can pick up: when I walked into her room in the morning the first thing I did was take a picture of the bulletin board at the foot of her bed which included all her vitals and other information. You may find yourself having to explain things over and over again to nurses, specialists. (Example: My mother had low sodium levels and they gave her salt tablets to try to raise them, which made her sick. Despite telling them to stop prescribing them, the meds kept coming for another two days and I had to intervene each time).
• I have to assume this varies from place to place, but keep in mind that generally speaking, the hospital administration is not your friend. They want the patient discharged ASAP. So double-check and verify all information they give you in terms of their health. (For example, many hospitals now have patient portal websites, I had to log in using my mom's credentials, but it gave me access to her test results and allowed me to dispute her discharge for 48 hours in a situation where it was needed).
• Yes, make friends with the nurses on the front line. Memorize their names. If you're going to the cafeteria ask them if you can pick them up something, 99% of the time they will say "No, thanks", but they will remember. (Example: After making friends with the front desk receptionist, she would happily print documents that I needed occasionally. On her day off, her replacement wouldn't give me the time of day).

General preparation

• So much good advice above, so I won't repeat it. One thing I didn't see was mention of "TOD" accounts (Transfer on Death). These generally apply to financial institutions, but they are way to avoid the probate process by putting things like checking, savings and brokerage accounts into someone's name. They are not for everyone, but worth looking into.
• People mentioned hospices above. Yes, it's going to be the last thing you *want* to do, but if you're in an area where there are choices, push yourself to research and visit these places ahead of time. When the time comes, you want the best hospice possible, and that may mean driving an extra hour to get there, but you will thank yourself later.

posted by jeremias at 3:47 PM on July 30, 2022 [6 favorites]

or small like "wow, I really should have noted their mobile phone password down."

That's actually not a small thing. If your person has established even so-so security (like two-factor authentication for their bank account, say), you might be dead in the water without that phone access. There can be a weird interim period between someone becoming unable to act for themselves or suddenly dying, and you later getting the full court-appointed authorization to act on their behalf. But in that interim period things still need to get paid, recurring charges need to be cut off, etc. and you will need those passwords to do things.

Also, make sure you have a piece of paper or a file on your desktop with all of their basic information: full legal name, social security (or equivalent where you are living) number, date and place of birth, address, phone number, and so on. Any time you learn a new piece of information (like drivers license number), add it to that file. Eventually, you will need to produce every piece of that information on various calls and it is invaluable to have it all in one place.
posted by Dip Flash at 5:03 PM on July 30, 2022

But in that interim period...

I lied to so many companies' chat support services that I was my mother and that I was cancelling/downgrading my service/subscription. Some of this stuff is easier to do if the company believes the person is still alive than if they are dealing with you as an executor or otherwise. Highly recommended.

Also, I'm not sure anyone has mentioned this but it's helpful (or was for me) to think about dying as work. That is, the person who is dying is doing something. People think about this or envision it different ways (sometimes depending on their own beliefs) but it's worth understanding that, to the extent that person has agency or you can bring it to them, helping them with that journey is a grace to them.

The person in the process of dying, often, their lives get smaller and this happens over time. They may lose interest in things they previously liked or engaged with (television, foods, emails, people, hobbies, pets) or they may not. But if they do, it's often a fairly normal thing and shouldn't be a cause for alarm. I often think of it like they've been inhabiting a very large house that (sometimes literally) they stop going to certain rooms of until they are mostly just in one room and not there at all. The more you can talk to people about these processes, they less they can feel scary, unexpected, or abnormal.
posted by jessamyn at 5:55 PM on July 30, 2022 [25 favorites]

I have heard people say that they wished they had involved palliative care specialists earlier. I had always thought that palliative care meant pain relief but no other medical treatment. Turns out I was wrong. Palliative care teams can work with other medical professionals who are focused on cure or treatment - it's just that their focus is on improving quality of life through relief of pain and stress. This Mayo Clinic page provides more details.
posted by FencingGal at 6:47 PM on July 30, 2022 [2 favorites]

Get a will and attendant paperwork in order NOW. Make all funeral plans NOW. It is so much worse to do this stuff when they’re at the end. My mom didn’t want to think about this stuff while she was going through treatment for pancreas cancer, and in the end she didn’t ever get to see where she was being buried and I had to plan the whole funeral. Also, some financial stuff with her investments got fucked up in a potentially very harmful way for one of the beneficiaries because by the time we got everything done, she was barely conscious anymore and on so much drugs she had no clue what was going on (honestly the notary involved should have declined because she was actively dying at the point it was finalized.) Also, be open to inpatient hospice care sooner than you think. Her symptoms became unmanageable for us at home but we were so used to caretaking after so many months that we kind of didn’t realize how bad things had gotten? And once she was being cared for by professionals 24/7 it was a relief. Inpatient hospice care is WAY different than in home care. Feel free to memail me, I can go on at length about my experience. Main takeaway, do all end of life planning while they are relatively ok, do not wait til the end.
posted by tatiana wishbone at 10:27 PM on July 30, 2022

Thirding suggestions around life admin: PoA, passwords, managing finances and accounts.

Always be researching the next step, so you know what to do when it arrives; when the need does arise, there won't always be time to investigate. e.g., Investigate home care agencies so you already know who to call; Research hospice options in your area, as the doctor will just call in a referral to whoever is the first on their list; when your person is still living at home, research the independent living, assisted living, memory care and nursing home options ahead of time, as you may need to get on a waiting list or need to make a decision quickly. Research will also help you surface the questions you need to ask.

Keep a medical binder with records, prescriptions, notes and dates from different doctor visits, test results, contact details for different specialists. Take this binder to every appointment, no matter how minor; make sure everyone who is a potential caretaker knows about the binder. Periodically capture on your phone or digital whatever, but keep the binder analog, because the person who takes your loved one to the ER when you are delayed with a work emergency won't have access to your phone. Being able to show physical evidence in the moment can also help you advocate for your loved one.

Talk to others about what you are going through. Ask for help and suggestions. I was surprised to discover how many friends/colleagues were going through or had gone through similar challenges and had never mentioned it. There's a lot of wisdom and experience out there. People who know the same doctors, people who had a similar procedure, people who had to find local supports. When my mother was dying I ended up leaning heavily on a friend from back in my high school days who had gone through the same with her mother two years earlier. Having someone to share with me very explicit details about how the disease progressed, and what kinds of things I should expect and be ready for was really helpful.

If the person is early in their journey, have them start to go through possessions with you. As painful as that can be, it's a chance to learn more about the person's life and what's important to them. There are many possessions that will become mysteries after they are gone. And it gives them a chance to bequeath an item with a story, making it all the more meaningful. Equally, it can be a chance to start eliminating stuff with no real meaning. This last bit is one of my bigger regrets; I found it too scary and painful to be deliberate about this, but I wish I had done more.
posted by amusebuche at 11:34 PM on July 30, 2022

I also prepared a hospital go bag, that we ended up taking to most medical appointments, since they would often get delayed or prolonged, and medical waiting rooms are cold and boring. The bag contained extra warm socks, a lightweight fleece blanket, snacks and candies, 1-2 bottles of water, some crossword puzzles and reading material, pens, tissues, and a change of underpants. A couple of times there was an unplanned hospital admission, and the bag really came in handy.
posted by amusebuche at 11:41 PM on July 30, 2022 [2 favorites]

But in that interim period...

Another thing worth mentioning, that was a surprise to me when dealing with it, is how much needs to get paid for out of pocket in the time between incapacity/death and having full account access (assuming you didn't already have POA paperwork set up and running at that point with full access to their accounts). For example, after death, someone needs to pay the funeral home, pay for any funeral costs, deal with rent or mortgage, and on and on, and unless you already have access to that person's accounts, those are going to come out of your pocket with eventual reimbursement once someone has executorship. In our case, it totaled out to quite a few thousands of dollars that fortunately I was in a position to be able to cover, but otherwise would have been a terrible situation.

These are all things that can be planned for in advance, from having a current will to setting up the right kinds of POA arrangements to perhaps allocating some funds ahead of time. (Heck, you can even preplan/prepay things like funeral home costs, if you wanted to.) I couldn't agree more with all of the comments above about discussing plans, setting up paperwork, and so on -- those might be awkward conversations, but any pieces that can be clarified or put into place now will help things later. And having clear, open conversations about what decisions they want made about medical care since there will likely be a point at which those decisions start getting made by you.
posted by Dip Flash at 7:36 AM on July 31, 2022

Get an Advance Directory/Health Care Power of Attorney in place asap. At least in the US, you can just google this and find a standard form that will be acceptable in your state. (Of course, you will probably be seeing a lawyer about other stuff and they will do this as a matter of course. The important thing to realize is that If they aren't ready to think though all the preferences, they can just fill out the part appointing a surrogate to make decisions on their behalf.

If there is question about family members who aren't the designated health care proxy trying to get involved, it is important to get this on file with any doctor's offices or hospitals that they are likely to be working with. I have been shocked at how casual the hospitals can be about asking adult who happens to be in the room to sign consent forms.

Also, you should know about POLST (Physicians' Orders for Life Saving Treatment). This is a medical (not legal) form that is signed by the doctor as well as the patient about what types of treatments are authorized or declined by the patient. It has binding authority over people like EMTs (the ambulance folks) who might otherwise be required to perform certain procedures if the patient doesn't actively and verbally refuse them. Read here about the two forms work together. It also allows for a greater level of detail than just DNR. For example, my very frail mother could allow for electronic paddles but refuse chest compressions using the POLST.
posted by metahawk at 2:03 PM on July 31, 2022 [1 favorite]

A medical binder is a great idea but as a minimum keep an updated list of medications (including time of day) with a copy on your phone. Almost every ER visit (and certainly every hospital admission) involves someone from the pharmacy going through the list of medication - name of medication, dosage, how often and when they last had it.
posted by metahawk at 2:06 PM on July 31, 2022

Ask for a single occupancy room in the hospital if possible. I went into the hospital with my Mom thinking we would be leaving and going home to hospice but that never happened. Sort of in line with the music suggestion- a small lamp with soft lighting, her own nightgown, a blanket from home. The lamp helps because then you can turn off the flourescent lights at night and the other items are more comfortable than the standard issue hospital stuff. Right before she died all her friends and my aunts and cousins came to the hospital and stayed up all night talking; my Mom had stopped talking by that point but she would react every once in awhile to someone's voice in the room or a story they were telling. It felt so intimate and I remember feeling so sad but so safe with a roomful of women I had known my whole life saying goodbye to their best friend and sister.
posted by Ipomoea at 8:47 PM on July 31, 2022 [4 favorites]

Recorder app on their phone or digital audio recorder, to record audio during doctor visits that you can't be there for. Occasionally doctors will push back, but within the context of 'look I just want to know what's being discussed and I don't want my loved one to worry about forgetting to tell me about something.'
if android, I recommend SmartRecorder.
posted by ApathyGirl at 12:55 PM on August 1, 2022

I had a hard time remembering that hospice meant we were letting go, when my emergency health training was kicking in. (But hospice will gently remind you and I did call them first, at we had their number on the fridge, in huge numbers.) Also, if you end up dealing with an end of life coma at home, the fire department can help move your loved one to a different bed, if needed (we had a medical bed come in about an hour later than would have been best). Just call their non-emergency line.

The other thing is, have a place to jot down info so you can find it later. A notebook or bullet journal, just write in all the stuff as it comes up and you'll be able to leaf back and find the stuff you need later as necessary.
posted by blueberry monster at 12:31 PM on August 7, 2022