How to Prepare for Long Term Care of Family Member?

If it were me, I'd make an excel spreadsheet. I'd have tabs on the bottom for daily, weekly, and monthly stuff (maybe even quarterly and annually if some doctors are seen once per year, for example). A separate tab called diagnoses that lists each diagnosis, the specialist for that diagnosis, and the phone number.

I feel like a spreadsheet where on the daily tab you have a list of each med (including all prescriptions and OTCs), next column over is the dosage, and next column over is the prescribing doctor on the daily sheet. Plus a list of any daily PT or other things she needs to do each day. Do something similar on the other tabs - for appointments that take place at scheduled intervals, go to the tab named that interval and put the doctors name with contact info. Etc. I think it would be easier for someone else to follow lists on a spreadsheet than something in an paragraph form.

I hope you come up with a solution that works for you.

Hi E.! This IS a toughie. We didn't face it in quite the same way as you are, but while our disabled sons were home with us, I had a 3 ring binder for each of them with everything sectioned out (medical records, contact info, medications, allergies, school/IEPs, etc). For our one son, it got so large that I ended up using one of those handled boxes with actual files in it by the end. If I was starting out today with needing to do the same thing, I think I would look into an Ipad that I could carry with me and push everything to the cloud and manage it that way. That way, in theory, anyone with the password to your online/cloud account, can access it from anywhere. And while I completely understand that your daughter is not capable of handling the enormity of this task, by making it online, she might be able to blog or take notes of her own or even journal and have it added to the account you have created (you had mentioned that she is able to do online stuff).

I love touching paper - its my thing. However, this type of document storage is the future, and will outlast any binder you create PLUS you can put highly sensitive information, like her social security number, scanned copies of her birth certificate, etc in there without fear of it getting "stolen" like a book that is carried around could be.

Good luck!

I am sure this is so overwhelming. I think making a daily, weekly, monthly annual care pages is a good idea.

Is there a way the doctors would allow her to record their appointment? I know some doctors freak out when a recorder is introduced at an appointment, but maybe since her circumstances are extraordinary, they would allow it?

I agree that getting started now is better than waiting when something happens. I don’t know if there are services for this type or care, but I would try to find out. I know respite care is sometimes offered to people with long-term medical issues for the caregivers - maybe that would be a start.

If there’s assisted living for this kind of circumstance, that would be great too. I know that sometimes people won’t step up until it’s expected.

I do not have a clue and realize you are more in tune to her abilities. Please know I have so much respect for all you do to help manage your daughter’s care and you do a phenomenal job. I do believe transition will be so much easier while you’re on the planet because you will be there for her to encourage her independence. What a hard thing to consider.

Blessings to you as you figure it out. You are an incredible mom. ❤️

oh, sweetie, i'm overwhelmed just reading this!

i'm betting there are great ideas down below. i have none so won't try.

but what i'm taking away from this is that your daughter MUST start taking ownership of her situation, and right away. if something happens to you, it will be a huge shock to everyone and a shambles right out of the gate, so i'd start working on her complete independence from you right now.

i'd start looking for an assisted living center that she can move into. there must be resources for a young adult who is unable to work or support herself in any way, and i don't think it's fair to assume her brother can step in and do all that you do.

if you get her settled now, while you're still here and able to help her, it will be much easier on her when you die, or become unable to care for her full time.

obviously the records need to be organized too. but i think i'd start with 'what happens if my husband and i both get hit by a bus tomorrow?' and lead with that.

good luck!

khairete
S.

The parents of medically complex children in my special ed parent group have lots and lots of paperwork, as I'm sure you do! They talk about having a binder that is the command central for them. I would start wherever it makes sense and then type up documents once your find a format/flow that fits. I think the final product could be a binder with sections and documents, with everything backed up electronically and accessible to your husband and son if they needed to find information.

One organizational approach is to have lists/sections by time and function. Build a master calendar (can be a simple list sorted by month) that has tasks that aren't daily or weekly, like that eye appointment, or getting a prescription re-authorized for auto-fill for 6 more months, or whatever. As things come up, add them to that list. Daily or weekly routines can go in a normal calendar/planner format. Maybe a chart for contacts - contact info, of course, but also descriptive info about who that person is (neurologist seen 3X year, eye doctor seen once a year, etc.). Make it easy to cross reference from the master calendar. Prescription info in another chart/page. Other therapies on another page. A section for current medical stats such as lab results. Details from past appointments, medical records, etc. can be stored in folders that are filed and labeled. Those are reference materials and not part of the "book" - there if needed, but anything important or changed that comes from an appointment could go into the book where it can be referenced readily.

Here are some resources that might be handy too the second one has a ton of templates you can use:
https://handtohold.org/organization-101-for-the-medically...

https://www.chop.edu/health-resources/care-binders-organi...

Bless your heart for doing all this. I know she is your baby, and of course you would do anything you could for her. But this is still so wonderful of you, and you deserve to hear that.

My first thought would be to contact your daughter's primary care physician and ask them for some guidance or suggestions. They may know of someone who specializes in just this ... organizing the details for someone who cannot do it themselves. A binder including contact information for all her doctors, her health records, prescriptions, calendar of appointments and an outline of her routine does seem like a good place to start. Your husband or anyone should be able to pick that up and at least get started. But there really is so much more that you are dealing with.

Hopefully there are professionals out there that can help you organize things for someone else and possibly help you feel a little less pressure yourself.

Hi E.,

We have gone through this with various family members, and I too have 'brain fog' at times (what we call it in my family) so I get the need to have someone with you at appointments.

What I do is have the doctor write it down. They will do that. I come out with lists, diagrams, post it notes ... encourage your daughter to get them to do this. They just need to be asked. Take a back seat.

I then take those notes, staple to the sheet that I get for appointment (reminder) and this goes on my cork board in my office. It sits there until I'm ready to file it.

My sister prefers a binder (for my mom).

Do whatever works for you (or in your daughter's case, for her). She should now own it.

Have an excel spreadsheet (or whatever system) with one tab for doctors, with pertinent info. One tab for meds (which doc prescribe/what pharmacy/what for etc.)

Have your daughter own this and update once every 6 months. You can 'share' this with your son.

Have her help with meals - first thing in morning. Owning this will empower her, and give her energy (mental). Making life as normal as possible is energizing. When I'm having a rough day, I get everything I can do done (sometimes not a lot) by 10 am. I putter. Hope that helps. When you feel you've accomplished something (even if small) it changes the outlook for the day.

Same for appointments. Ask to schedule them for first thing. Mine are first ones of day. They will do this for you - brain fog is minimized in morning usually. If meds make brain fog, then try to time it so that she's alert.

She should 'own' this as much as possible.

It's only really when cognitive abilities decline (dementia) as opposed to 'brain fog' and fatigue that you need to step in a lot. Rest and puttering is *hopefully* do-able with brain fog and fatigue if she gets into a routine. Then she can own more of this and you can start to back off a bit. Independence will follow bit by bit. (if her condition worsens, etc. that's something to address later on, but see how these steps go). Hopefully she adapts to it well.

Hopefully that helps. It works for us. Good luck and keep us posted :)

ETA: I get what Ziggy is saying, and hope I didn't come off as insensitive or suggesting you've been negligent. Not at all. Every case is different (everyone is unique) and I don't know your daughter's situation fully. She may find it very taxing and it might just be way too much at this point. I myself have my husband handle all the taxes, etc. although I am trying to get back involved with this - at least sitting in, so that I have a clue. Initially, it's easy to hand your life over to others while you're trying to grasp that you're not well (which is draining enough as it is). Over time though, taking back ownership a little at a time, is a really good thing - whatever she is able. It is huge for self esteem. Feeling powerless (medically) health wise is so .. tough. Feeling dependent on others .. horrible when you're an adult. So that's why I'm encouraging her to take ownership where she can.

Remember, there are so many people who don't have the benefit (luxury really) of having a 'you' to help them. Doctors and medical professionals (pharmacists, physiotherapists, etc.) will help .. let her ask them for help. She can even ask them to speak clearly their instructions and she can record it on her phone. It's do-able.

ETA: If your daughter does not have any mental disabilities? She should be able help you put this together. In no way do I believe you have been negligent as one poster has suggested. Nor do I believe that anyone here has said that.

If you give her something to be responsible for? It might help her!
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E.

If your daughter is cognitive and not intellectually disabled? SHE MUST TAKE OWNERSHIP OF THIS. You need to start having her prepare her stuff. She can do it.

For my mother-in-law, who is slowing down and not doing well, we have two things for the family: a binder with all of her doctors and prescriptions. We have it on a RED USB Thumb Drive with a lanyard attached. We have copies for each of her sons and her.

The folder and USB are updated with each doctor visit.
We have pictures of the pills she takes in the folder and since everything is done electronically, it updates the USB at the same time.

I am the one in charge of updating this. I then send e-mails with the updates to each family member for them to download.

I know it sounds like a lot. But It's much better when EVERYONE is informed and knows what is going on.

That binder is located in her kitchen and is RED with a black cross on it - that says "Jane's LIFE FOLDER" as well. It sits behind the phone so IF there is an emergency and none of us is there to help. It's much like the "life alert" for the house.

Having her take control and manage this is a good thing. SHE CAN DO IT. Work with her on it. Get her into the habit of keeping it updated.

It might be helpful to remember that everything you’re describing is connected to your daughter’s medical conditions.

So - maybe some “solutions” to the issues you describe could be cobbled together by the people working to solve her medical conditions - her doctors.

“Hey doc, you probably noticed that Suzy basically slept through her last appointment with you - thank goodness that I was here and focused because otherwise who knows how many pills she’d take incorrectly - any ideas about how to prevent that in the future? More caffeine before appointments or what?!”

“Hey doc, I’m not getting any younger...any recommendations of software programs for recording all of Suzy’s medical information in case a different caretaker needs to step in?”

I just can’t imagine that you are the first person in the doctors’ experience who has ever faced these problems. Use them as resources and see if that helps.

Just reading this is very overwhelming!
I like the idea of putting everything both in a speadsheet AND in a binder. The spreadsheet could be more detailed (and updated after every appointment) but the binder could hold all of the overall information: current doctors, conditions, medicines, etc. That would be a good starting point and general overview in an emergency situation (like if, God forbid, you and your husband were in an accident.)
I think it's important as well to keep pushing, or "guiding" your daughter to be more independent though. Clearly I can't comment on her condition but I would imagine her physical illness and fatigue plus the cocktail of medications she is on probably keep her in a kind of fog most of the time. I would continue to insist she go to her dr appointments on her own, reminding her that she WILL eventually be on her own. Her brother may eventually be able to handle her financial and legal obligations but she will still need to have basic personal responsibilty for herself. Since she isn't cognitively or intellectually impaired I don't think she will qualify for any of those services (like people with Down Syndrome get, for example.)
Is she able to read? write/type? play games? participate in online gaming or social communities? Remind her that the same skills are required when going to the doctor. Paying attention, taking notes, remembering things, maybe using her phone to record conversations if that helps. And of course using the phone or internet to communicate with her medical team if she is confused later.
And if a trip to the grocery store is too much start teaching her how to order food and other basic necessities online NOW.
Good luck E., I know this can't be easy :-(

You're thinking about the long term - and while that's good - you're not thinking long term enough.
You are 60.
How long exactly do you think this can go on?
Can you keep doing it till you're 70 or 80?
And then what happens?

Because the long and the short of it is - your daughter is going to out live you.
Either she's going to have to learn to be more independent or someone is going to have to take over from you - and your son might not want to nor should he have to do it.

It's time - for better or for worse - that the learning to live independently starts now (or more ideally 10 years ago - but that ship has sailed).
Your daughter can record directions given at appointments.
Doctors can - and should - write things down and hand them to her or send her a PDF of instructions.
Instead of building her a suite to live in in your home - she should be living in an assisted living or halfway house so she makes friends and learns the skills she will need to have once you are gone.
Do you want her learning it after you are gone? No? Then now is best.

As for writing of the detailed care and keeping of your daughter manual - break it down into tasks and take it one at a time.
Afterward organize them into a binder with a detailed index and table of contents.
These sorts of things are evolving documents/manuals- they change over time and need to be kept up to date or they quickly become worthless.

Additional
I said your daughter needs to handle more in case you, your husband AND your son all get hit by a bus.
If there is absolutely no one to take this on then what will happen to your daughter?
Would a social worker do what needs to be done?
Will she have to hire an assistant or a care giver to take care of her?

We are going through this with my mom.

She doesn't have dementia but she is getting up there in years. We worked with a social worker and they gave us some guidelines and suggestions.

There is a "family emergency" plan on FEMA
https://www.fema.gov/media-library-data/1440449346150-1ff...

you can pick and choose what you need from this. Ensure that everyone that needs a copy has a copy.

We are doing a USB drive for everyone to download.
We are putting together a folder for in her kitchen.
We have:
* taken a picture of all of her medications and when she is supposed to take them.
* made a list of all of her doctors, their addresses, phone numbers and how often she is to see them.
* noted which pharmacy she uses.
* put an address book together of emergency contacts.
* we included her insurance card (photo copy of back and front)
* made a list of food and medicine allergies (even though she has the bracelet).
* scanned in her most recent doctor's visits as well so they have some semblance of medical records.
* we are making a thumb drive for her purse so in case something happens to her while she is out shopping. The counselor suggested a BRIGHT COLOR and put "ICE" on it so if some thing does happen to her? Someone can find a USB port and get the necessary information.

I believe that if your daughter is not mentally challenged? that she should help with this. She needs to start trying to help herself. She can't be dependent upon you forever. We know this for a fact, right? Instead of coddling her? Have her work with you on this. It's not something you just throw at her. You sit her down and you say, Jane, we need you to be more proactive in your care.

Tell me who your doctors are.
Tell me what you see your doctor's for.
Tell me about the medications you take.
Let her help you fill this out.

I have zero experience with this, but I agree you need to have all this written down somewhere. I would do it digitally as well just because I find this easier than dealing with a bunch of papers and binders. Also, it seems to me like your daughter should start taking charge more and start relying on you less...to give you some peace of mind that she can do this. You don't say what her medical problems are so please excuse my advice if it is totally out of bounds and not realistic. Some ideas I have are 1. She needs to have the doctor/nurse write everything down at an appointment. Or she writes it down if possible. I also totally forget what the doctors say when I see them and I have to take notes. 2. She (or her future caregiver) needs to keep a google calendar. She can use the app on her phone to set appointments and can set a reminder for a year ahead for when she needs to make an appointment with the eye doctor or whoever. I do this for all my doctor appointments and it's a life saver. When she puts in an appointment on her phone she will then see it on her google calendar on her computer at home. She can even share this calendar with her brother if she wants to...for example, if he will be the one driving her. Then on his google calendar he can see her appointments too. In the google calendar under description she can put in the doctors name, address, phone number, etc. 3. Yes a binder might be good. Just use tab dividers for each medical issue. Older issues and info could go into a "Past" binder for reference. 4. As for meals, she can get meals delivered say 5x a week and eat leftovers or easy things the other times. There are many quick and easy things she could learn to make that are healthy if she is feeling up to it. 5. As for driving places, can she use Uber or Lyft? 6. She may also need a service who provides a caregiver who checks in on her x times a week. 7. As for remembering medications can an alarm be set on her phone for the time she needs to take them each day? 8. Does she feel useless in life and like she has no purpose? Does she have goals and plans she works towards? I know that if I start to really get bogged down thinking about all the medical things wrong with me it then starts a bout of depression. In the times she is feeling good I hope there is something in her life she can work towards or contribute to. I only make this point because I deal with several chronic diseases and also chronic pain and it's the depression that is the worst. It's a battle.

ETA - didn't your daughter work while you lived in Hawaii? I thought she worked part-time while you were living there....

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Type everything up (and yes - TYPE - as there will be less confusion with typing than with handwriting. Have a folder for daily use and a thumb drive (USB) for all of her stuff as well. Your daughter needs to contribute to this and start taking ownership of things. This SHOULD help her. And help you as well. Before my dad died - this is what my sister and I did for our dad....

The 3-ring binder/folder should have sections:

* Calendar
She should be able to update her calendar. And you should as well.
Keep track of any new symptoms, log them. Doctors appointments, etc.

* Daily medications -
Her daily medications - when she gets them and what she cannot have with them (like some medications can't be taken with grapefruit juice)
what the pills look like should they get spilled - we took pictures of my dad's medications.

* Any known allergies
Allergies to foods or medications and what her reactions are

* Pharmacy -
What pharmacy has her prescriptions.
How often they are refilled and by whom
Take a picture of each prescription bottle as well.

Medical records with diagnosis
* her diagnosed medical condition(s)
There should be a section on each of her diagnosis'

* Her doctors -
Their numbers - what they are for - and how often she sees them.
Addresses of the facilities/offices she goes to visit.

* Her schedule/routine (this isn't like the calendar)
What she does. Where she does it.

* Emergency contacts
We all have to have emergency contacts

And anything else that is pertinent to her care and daily routine. The folder should be in a 3-ring binder with sections and each one laminated. Then everything should be on a thumb drive. Both folder and drive need to be updated should doctors change or something new is added.

You need to ensure that your will is EXTREMELY CLEAR about her care and living arrangements.

I personally would set her up in an assisted living place that has great references and you have been to at different times of the day, week, month, etc.

I think this is something that will take time to put together. I would get a 3 ring binder and make sections. One with all her meds doses, one that has all her drs info and what a general idea of what she sees them for. Than sections for details on what each of what she sees those drs for and then when you go to the dr take notes and put all notes taken in there. You could also keep an electronic file of this. You might keep the hard copy with your will. That way they can be found together. Make sure your son knows where you will and the binder are.
One of my friends mothers passed away recently and they searched everywhere and could not find the will. I still don't know if they have ever found it. So make it somewhere that it can be found.
I admire what you are doing for your daughter. Not all parents would do that. And some people don't understand the type of depression comes along with having even one chronic sickness.

I'm completely shocked by some of the responses suggesting that your daughter should be taking this on and that you've somehow been negligent in not turning this over to her sooner. Some people are simply not capable of that and never will be. Some people have physical disabilities, medical issues, neurological challenges, learning disabilities, etc.

There are individuals who may never be able to completely function on their own without help. Please do not allow the ignorance of some of these responses to upset you. Those are very hurtful things to say to a mother who is doing everything in her power to take her daughter to the right experts and seek out the best help possible.

If your daughter is seeing multiple doctors, it might be a good idea to seek the advice of one of her doctors or possible a counselor or social worker. There are most certainly other parents in your position who need to plan for the future and make specific arrangements for their adult child.

Writing or typing everything, binders, spreadsheets, etc. Those are all nice ideas, but you are likely talking about something much more involved. I think you need to have a professional help you out.

My mom can’t do excel sheets or read them. But she can understand a calendar book. Two pages opened up with the whole month spread out on those two pages. Stapled to the inside of the first page before January starts is a list of all the doctor’s phone numbers and addresses. She adds to it until it gets too messy, and then recopies it and removes entries that aren’t current. She has a list of all her meds and supplements, how often to take them and when. She keeps that in there too. Every appointment is written in there along with directions for when appointments should generally be made.

Everything other than her EOB’s are in there. I don’t know if your daughter could possibly keep her calendar, but if you put one together for her and write in it WITH her, it might give her some ownership of it, with you making sure that all your knowledge is in there. I have done Word docs of stuff for my mom that is long and changes (like medication and supplements) so that Mom doesn’t have to work too hard, and I put new copies in her calendar for her. This calendar sits on her coffee table. Having it in front of her makes her feel secure. You might try something like that and see how she handles it.

My aunt lived with us. We had a caretaker visit 3 days a week. Another friend in assisted living had a nurse who monitored her meds. When she was no longer able to take of her personal needs, the state paid.the home for an extra personal care taker.

Both of these women were without personal funds to pay for help. Both my.aunt and friend received Social Security. Your daughter has no money and is on SSI. I'd explore the possibility of receiving state or Federal Aid. It is a government agency and it's difficult to find the right person to talk with.

My daughter was receiving state aid while she was in school. The state paid me to take care of her kids. Three.of my grandchildren are on the spectrum. My daughter was able to find a county or Federally funded agency who pay for an aid to teach them social skills. Each of them interacts with a different child. The aid taught the 15yo how to use public transportation. He takes my grandson to the store to learn how to use stores.

My brother is 63; has been receiving SSI payments and food stamps. He has access to medical care paid by SSI.

All of these people's stories are different so your daughter may not be qualified but I suggest you talk with her case manager and see if she can help you find different resources. Perhaps they can provide someone to help you make records. I suggest it's worth asking.

I also suggest asking the doctor for help. The records you are.compiling are medical records. A medical person could possibly give you help.

My friend's assisted living manager had loose leaf notebook. The only page I saw was a spreadsheet outlining medication. It was easy to read.

i would see what long term care programs are available in your state. She has medicaid if she’s on SSI so get a care coordinator from her insurance. Most states have waiver programs for dd, disabled and elderly, med frag etc....she may need to have in home providers or live in an assisted living facility....i also think that learning as much of her own care and being responsible for it is equally as important...

Wow, I am overwhelmed just reading this, much respect from me on being such a tough, driven, involved mom, I'm not sure I could do even half the job you do, and keep everything in order in my head, wow! How about a three-ring binder with tabs, like "medication", "doctor appointments/contact info", "website addresses/passwords"? I would keep a separate, larger "notes" binder detailing notes on each doctor visit (you can organize each tab per doctor or specialty, like "Dr. Smith", "Dr. Jones" or "neurologist", "cardiologist", as the notes may get too confusing if mixed with the other binder that would contain the basics).

I would also get a cloud drive subscription (Google drive, Amazon drive, etc.) and back everything up on there. Google Drive is Free, Amazon Drive I think has a fee, unless you're a Prime member (not sure, since I do have Prime and get it free). I'm sure there are other similar companies though, if these two aren't of interest. You can create individual folders and even sub-folders for each subject on the drive. Spreadsheets may be too complicated for a future caregiver whose computer knowledge is limited and Excel is very intimidating for a lot of people, especially those who have never worked with spreadsheets. Hard drives crash, thumb drives get damaged or lost, the cloud can be accessed from any computer anywhere in the world, and would be a back-up in case the folders get lost or damaged in a flood, fire, or any other phenomenon.

I agree with typing everything out on the hard copy paper binder, as handwriting may be difficult for some to read. As to your daughter's appointments and taking notes -- could she use something like a tablet with Dragon NaturallySpeaking software that would listen and type out whatever the doctor mentions, in real time, on to her tablet, so as to remove the risk of her jumbling up his instructions/comments? There are also tablets and phones like the Galaxy Note that have handwriting recognition that transforms handwriting into typing, if you think she is able to write quickly enough as the doctor speaks, and still retain and listen at the same time. There is something called a Pill Alert that provides an alarm feature that can be set to ring at the time or times medication needs to be taken. For appointments, I would use a large wall organizer calendar, where everything can be written down.

Have you looked into an aide? Not sure if insurance covers this or what, but I know there have been times where we had someone in class or even in the work environment, that could not type, had ADD, or had mobility issues, and they had someone with them at all times to help them, by writing on their behalf during tests, or essays, or if they had mobility issues, they accompanied them to the restroom and helped them with that. Maybe there are scholarships or some other sort of financial assistance if insurance won't cover it fully, but it's something to look into if you think your son may get too overwhelmed with caretaker duties, or becomes ill.