Help Me Help My Dad
August 30, 2017 2:58 PM   Subscribe

I am visiting my dad who lives out of state. He had cataract surgery yesterday and needs to take a bunch of drops for the first week and fewer over the next three weeks. He has phone problems, money problems, and more. Help!

First off, my dad has a housemate who is struggling with his own disability. My dad has a hospice nurse who comes once a week. My dad is poor and I am struggling. Even if we had money, my dad is sufficiently stubborn to say no to almost all the help he is offered. If you have dealt with an elderly person or another person who has difficulty understanding and difficulty being understood, please help me figure out a couple of things.

1. What's the easiest, most obvious way of helping my dad and his housemate track my dad's remaining eyedrops over the next 3 1/2 weeks? I was supposed to go home last week and found out about the surgery by accident and extended my trip by a week. But I can't stay past Friday. My dad needs 3 types of eyedrops 4x daily until next Wednesday. After that he needs 2 types 2x daily for three more weeks. A simple chart with big writing listing the times and days for his drops might work, but if there's a better solution please tell me.

2. My dad keeps buying and losing shitty tiny flip phones that he can't even use. Has anyone used or known people who use jitterbug or other phones that work well for elderly people or thise with hearing, vision and dexterity problems?

3. My dad is a veteran, and I'm on his emergency kist. I know there are ways to monitor his appointments but I'm not sure how. Also, he takes a blood thinner and because of HIPA apparently the pharmacy can't call me to tell me if his dosage changes after a blood test. But they often can't tell him either because he doesn't hear his phone ring, and is unable to use the voice mailbox feature. If I knew what the change was I could text his housemate. Yikes! Dunno what to do about that one.

4. My dad has a hospice social worker but she can't do much when he says no to all of her suggestions. My dad is determined to stay at home and I am determined to help him, but it is increasingly hard for him to keep track of things, including bills and cash. I do have a signed power of attorney from several years back which I haven't used yet because he will rip me a new one if I do.

Any suggestions, advice, or moral support is welcome. I love my dad and would like to make life easier for him if it all possible. I am watching him become more and more isolated and it's hard on both of us.
posted by Bella Donna to Health & Fitness (15 answers total) 2 users marked this as a favorite
Bella Donna, I don't know where you are, but your first stop should be the local council for the aging or a similar social services agency. It sounds like what you need is a geriatric care manager, who might be able to help set up a few systems to help. I was able to get a free consultation with a local care manager, who did have some suggestions for us.

It also sounds like your father might be suffering from dementia, in which case I recommend connecting with the Alzheimer's Association, who might also be able to point you towards resources.

I am afraid I do not have any easy answers to the problem of getting him to agree to things that will help him. He sees this stuff as threatening his independence, and an indication that his health is failing, and neither of those things are acceptable to him.

If he's willing to let you help him, he might allow you to make arrangements if you sell it as the sort of thing you would do for him if you were there. But I don't know: I had a hell of a time getting my parents to allow me to hire in cooks for them and other types of support.

Good luck.
posted by suelac at 3:10 PM on August 30, 2017 [2 favorites]

The eyedrops sound distressingly complicated. In addition to a chart, drawn and redrawn until your dad understands it, would it help at all to put colored dots on the different bottles? (Or does he always use the entire group at the same time? If he ever needs to discriminate, then make the bottles easier to tell apart.)

I would have the current schedule on one piece of paper and the schedule for later on on the page behind it. (So the complexity that he sees is cut in half.) At the bottom of the first page, when the right date is reached, it should say, flip me over and go on to second page. (or backside)

Maybe make some calls with him at your elbow (so he can get on the line and agree that it's okay that you are looped in). Let the medical establishment folks know that he can't receive emails. Change his email message, if possible, to say "DON'T leave a message, this mailbox isn't functional. Please call back." Maybe suggest the best time to call?

Also make his phone louder?

I don't know to jolly him along and get cooperation. When you have time, if ever, you could give more hints about his personality and maybe use your second question of the week on persuasion tactics. Uh, hypothetically I might say "What would make you more comfortable?" and "Let me help you get what you want."
posted by puddledork at 3:44 PM on August 30, 2017

My sisters and I are dealing with exactly this kind of stuff with my mother. It's very hard, and you have my sympathy. My mother is belligerently independent and fights us on everything, every step of the way.

She had cataract surgery a few months ago, and we had these same issues. Basically I typed up a sheet in HUGE font spelling out what to take and how much each day. I also printed out a super basic calendar grid on which I also wrote out what and how much of each type of drop to take on each day. She's no longer able to use her computer or printer, so I made these and mailed them to her. As far as I know it worked fine, and she took her drops as instructed.

About the phone, my mother is also baffled by her cell phone. We got her a super simplified phone popular with elderly people. She can answer it OK, and sometimes (and sometimes not) make calls. But she doesn't understand about charging it and will also usually forget to carry it with her. She deals way better with a landline. She understands that much better. She can't really use the message function any more, so if we call and leave a message she probably won't get it. But the phone is always in the same place, and she can hear it ring well. She also just gets how it works better than a cell phone.

We don't have any power of attorney yet for her finances. But we managed to get her to switch providers to one who specializes in geriatric patients. Their office keeps us updated and allows us to accompany my mother (when she lets us) to appointments. They will take calls from us, checking on labs, updates, etc. My mother struggles with this, but at least we can help her keep track of appointments and conversations she had with the doc and nurses. They are also acting as a clearing house for other types of services.

Also, Suelac is absolute right: definitely check in with your dad's local council on aging. There are a lot of free resources for elderly and their families.
posted by primate moon at 3:44 PM on August 30, 2017

3. My dad is a veteran, and I'm on his emergency kist. I know there are ways to monitor his appointments but I'm not sure how. Also, he takes a blood thinner and because of HIPA apparently the pharmacy can't call me to tell me if his dosage changes after a blood test.

Sorry, I'm blanking on the word at the moment, but my mom was able to add me as "authorized" in her Kaiser file so I could talk to her doctors and pharmacy. This was done without anything as formal like a power of attorney, although she may have had to sign something or give her doctors a verbal okay. If he'd be on board with that, the social worker should be able to help. In fact, my mom's social worker has been the most valuable resource I've found.

I'm not sure how anyone deals with the stubbornness issue :( In my mom's case, the stubbornness was almost entirely about pride and also not letting her neighbors seeing her in need. With this framing I was at least able to work around certain issues, like if she wouldn't go with an ambulance, promising to go to the ER with me.

Sadly, I agree with suelac that this might be related to cognitive issues. Good luck, and don't forget to take care of yourself.
posted by Room 641-A at 4:21 PM on August 30, 2017

This was my drops system after cataract surgery. It's a lot of drops for a long time. My system was dumb but very effective!

Took a sheet of paper. Divided it by four: and wrote in each section either wake, noon, evening, sleep.

Started all the drops in the morning section. After I took a drop, moved that bottle to the afternoon section. And so on.

It was also helpful with erratic sleeping times. I always knew which I had already taken. When the next round was.

No alarms, no smartphone bullshit. A piece of paper and a pencil. (Though I divided the paper vertically.)

I do a form of this for my regular daily pills. Never have to worry I missed something. Did I? Didn't I? Nope.

It's also the easiest surgery ever.
posted by crankyrogalsky at 4:31 PM on August 30, 2017 [2 favorites]

Oh, right! HIPAA. You need to get a form from your father's doctors that authorizes them to share information with you. Otherwise you can only tell them things but they won't keep you updated.

And I second the idea that a landline is preferable to a cellphone. Until nearly the very end, my father was mostly able to use a landline, but he never remembed to charge his cell, or carry it with him, or whatever. Get him a landline if you can.

(I am working on a series of blog posts about all the crappy shit I learned in the last few years as my parents failed and then passed away. When it's done I'll put it up in Projects.)
posted by suelac at 4:42 PM on August 30, 2017 [2 favorites]

I recently had my second cataract surgery. One result is that I can't focus on anything closer than arm's length any more, which means things like the eyedrop bottles are all unreadable now. I'm fortunate to not share some of the problems your father has, but I'm aware that the vision impairment has both physical and emotional effects, because the incapacitation is itself frustrating.

The following two things helped me a great deal, with regards to the drug regimen:

1. Cheap reading glasses. The qualitative difference between the $30 reading glasses available at nice stores and the $6 reading glasses at Big Lots is negligible. Get the cheapest ones with plastic frames (they're sturdier) and he'll do fine for basic activities. You can go even cheaper on Amazon and Ebay but it means waiting weeks for shipping from China. If you can splurge, get two sets of reading glasses, one each at different strengths, say 1.5x and 2.5x. This will make it easier for him to read bottle labels and written instructions, as well as finding small things left on nightstands, counters, etc. It also helps him find one pair of glasses when he's lost the other.
2. Brightly-colored post-it bookmark tabs. Use these to color-code the eyedrop bottles. Use some cellophane tape to secure the bookmark tabs.

The eye clinic where I had my eye surgery gave me a large full-color printout of my eyedrop regimen: a table with week number across the top and photo of eyedrop bottle in the left column. So for example, week 1 had eyedrop A twice a day, eyedrop B four times a day, eyedrop C four times a day. Week 2 had eyedrop A twice a day, eyedrop B halted, eyedrop C four times a day, and so on. It's been very helpful at making sense of a complicated regimen. Create a grid like that, using the bookmark tab labels instead of eyedrop bottle photos to label each row. You can break this down further into a daily schedule if that will be more helpful to him. (eg, "August 30: 8 AM: eyedrop A, B and C. 12 noon: eyedrop B and C. 4 PM: Eyedrop B and C. 8 PM: Eyedrop A, B and C")

Then, in combination with his reading glasses, there is now a simplified means of reviewing the medicines to take every day.

HIPAA means the doctor and the pharmacy cannot voluntarily share your father's health and medical information with you. But ask if they can notify you of every attempt to contact him. This retains patient confidentiality while keeping your in the loop regarding your father's activity; you can then follow up with your father about the contact and nudge him to act on it.
posted by Subaru drwxrwxrwx at 5:03 PM on August 30, 2017

This isn't a short term solution, but you mention your dad is a veteran, and he has access to a social worker. Have you/has the social worker looked into the VA Aid & Attendance benefit? It's supplemental income that can be used to pay for extra in home care-like someone to come help your dad with taking medications, or other medical/personal care needs. It requires application, and the social worker your dad already has working with him should be able to help get that ball rolling.
posted by little mouth at 5:38 PM on August 30, 2017 [1 favorite]

Re landlines, check out this California program that provides free phones for seniors with many different helpful features including large displays, loud ringers, etc.
posted by Room 641-A at 6:02 PM on August 30, 2017

It would be worth getting him an amplified phone device like this one.
Also it's the doctors office who determines how much his anticoagulant dose should change based on lab tests. Have your dad sign a medical power of attorney so you can talk with his doctor and talk with now about what he wants at end of life.
It's hard to worry long distance but often for sick elderly people the best thing you can give them is a regular phone call and a chance to have someone to talk with.
posted by SyraCarol at 7:14 PM on August 30, 2017

There is no brand of cell phone that won't get lost. Landline. Check into captioning telephones.
posted by yohko at 9:57 PM on August 30, 2017

Also, my doctor was very clear that I was not to get reading glasses stronger than 1.00. Your doctor might differ. I toughed it out and read like crazy to get my eye working (this depends on what kind of lenses he gets - DM me if you want more specifics.)

I am 45, so I was young and didn't need reading glasses until after the surgery. I was the youngest by decades, so my experience was a little different.

I also got an eye patch because the difference in vision between surgeries made me nuts.

Best-case scenario - I couldn't believe how much better my vision was by the day after surgery. I was super annoying about it. Find some pals who've had the surgery too. They can talk about it for hours. HOURS. I'm just a year out and am mostly done geeking out about all the colors. (White is a whole different white now! Headlights aren't just a terrible blur! Hours.)

Last advice - the idea of the surgery is terrifying if you haven't had eye surgery before. I was convinced I'd end up blind - basically did a goodbye world turn the morning of. And felt like I was walking the green mile to the OR. So being sensitive to that would be nice.

It literally takes 10 minutes - and you're sort of awake. The last next to me left her shoes on. I was anxious so got a little bump in whatever light anesthesia they use.

My parents were pretty dismissive about how freaked out I was. But I'll get my revenge when they have theirs.
posted by crankyrogalsky at 12:24 AM on August 31, 2017

The doctor's office, especially if it is Kaiser, should have a standard form (maybe even available on their website) that your father can sign that will authorize them to share medical information with you. It is different from a medical power of attorney (information not decision making power). If he does' have that, you need one asap.

Also, most big practices now have some way to access your health information on line. Get him set up and make sure you have the password. This will allow you to go and see appointments, medications, test results etc. You can also send emails "from him" to the care team to ask questions (I always mention in the email that it is coming from me but in my experience once people get old enough, the doctors all assume some other family member is managing their care and they get less picky about hipaa)

One option is your dad really doesn't do phone well is that have him list your number as his official phone number then all messages will show up on your phone and it will be on you to get to the information to him a way he understands. (This may or may not be an improvement)

We got a jitterbug phone for my MIL and she is going pretty well with it. Larger print, simpler interface. Plus you can set up an on-line account that will allow you to add names to his phone book for him. You can may extra to get the operator service where your dad can just push the operator button and tell them what he needs (call my son for me) and they can look up the number in the on-line version of his phone book and make the call for him. Still needs to remember to charge and and to take it with him.
posted by metahawk at 12:08 PM on September 1, 2017 [1 favorite]

Oh, yes, it's the HIPPA release form I was talking about, and it's less threatening than powers of attorney, etc, if your father isn't ready to give up that kind of control. Setting up an online account is also a great idea.
posted by Room 641-A at 12:46 PM on September 1, 2017

Mostly just echoing what has already been said, but I wanted to pass along a hint that worked for us -- when I made a chart for my dad's eye drop regimen, I color coded it - I mean, I sharpie inked green dots on one med, red dots on another, and blue on the third. Make SURE the dots are big enough that he can see the difference in the colors (while his eyes were healing, my dad had trouble distinguishing between the blue and black until I made them big enough, and probably would have had trouble distinguishing between red and orange). Then when I made the calendar chart, I didn't just say, 3 blue drops on Monday - I made 3 blue dots on the calendar so he could SEE how many times he had to use the blue dot medication and mark them off as he used them. You can extend the system to all of his meds if it helps.

My dad lives in a small town, so we didn't have to even fill out a HIPAA form, he just told each of his care providers and the pharmacy and his insurance supplements to add me as someone authorized to talk to about his care. We did it as we talked to each agency (and he was sitting there so I could hand him the phone and he could say "Yes, you can tell her," but you can probably do it ahead of needing to talk to them. If he is on Medicare, this is also super-important to help you keep track of his appointments.

Also ditto-ing find out if your dad qualifies for VA Aid and Attendance. In fact, contact the VA to find out all the help he qualifies for as a veteran. He probably won't qualify for everything they offer (few do), but he may qualify for some. Also contact your state/area's Council on Aging to see what programs are offered in his state/county that may help him. The national site can get you started - it is here. Check to see if your town/city has a senior center and what programs they offer that may help. Local caregiver support groups may have specific information on locally available programs that you might not know about because you are not local. Many of the fraternal service organizations in his town may also have programs to assist local veterans; it takes some time to track them all down, but it really can help provide things you would do if you were there, and that help keep your dad as independent as he can be in his own home.
posted by faineant at 12:53 PM on September 3, 2017

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