What a drag it is gettin’ old

by Mémé

Many of us have older relatives who need nearby if not active supervision – not because they are demented or frail, but because the details of daily life have become too much to manage. Some of it is adjusting to modern electronics and communications. Some of is a result of spread out car dependent communities and a declining ability to drive oneself. But some of it seems to be avoidable.

One example, as described by this New Old Age column in the NYT, is medication management.

A Prescription for Confusion: When to Take All Those Pills

Lest you think this is an exaggeration, I present DH’s pill regimen. I am live-in, obviously, and manage it because even though he can still win regional bridge events, he can’t keep track of all of this, for example, the meds that have been eliminated but the pharmacy stills sends refill reminders, the varying dosages by day of the week. Or the generic supplier is changed and the refill is a different size and/or color. Or there are five white round pills that resemble each other. He has one of those 7 x 4 pillboxes I fill every Sun morning. The first pill was recently adjusted over the phone (did I mention he is hard of hearing and doesn’t wear his hearing aids around the house?) throw out old pills (trip to police station required for safe disposal). Get new pills different dosage (trip to pharmacy required.) I had to pry the phone from his hand to speak directly to the nurse.

Upon waking –
Thyroid – 1 pill 4 days a week, 1 ½ three days.

Breakfast – must wait a full hour after wake up pill
Gout
Diabetes
Diuretics (F & S)
BP L
Heart C (1 ½ pills)
Heart D (1 pill 4 days, ½ 3 days)
Vitamin D
Multivitamin
Mood B

Dinner –
Diabetes
Mood B
Blood thinner – twice a month blood draws at the doctor’s office – dose then adjusted over the phone – sometimes just for a day or two

Bedtime –
Mood E
Sleep aid
Heart C (1 ½)
BP L ( ½ )

Totebaggers, what would you suggest to make life less confusing for elders (or children) and their caretakers? I also know that an orderly family life, even without elders in the mix, is made more difficult by seemingly artificial constraints relating to kids and school and work, but somehow we expect that children need help navigating and employers will be arbitrary.

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86 thoughts on “What a drag it is gettin’ old

  1. I don’t have any answers, but I can add a question:

    What do you when the parent is resistant to actually taking her medicines?

  2. The first pill was recently adjusted over the phone (did I mention he is hard of hearing and doesn’t wear his hearing aids around the house?)

    Does his doctor’s office have a web portal you can use? I’ve had much better luck with that than trying to call, leave v-mail, etc.

  3. One thing that leaps out at me is they’ve found you can do the thyroid med weekly because it has such a long half-life. Ask the dr if you can do weekly dosing.

    Another is the blood thinner – I’m assuming he’s on warfarin. Ask the dr about switching to xarelto or eliquis, they don’t require the INR checks or the dose adjustments. (An aside on that – the pharm companies don’t seem to realize how much they are shooting themselves in the foot with all those commercials. I have had quite a few patients refuse to switch because they see the commercials that list all those possible side effects, even though if warfarin was advertised on TV they would list all the same side effects. Older people – the ones who take these drugs – are totally scared off of them.)

  4. What do you when the parent is resistant to actually taking her medicines?

    If the person is competent to make their own decisions, it is their right to refuse medications.

  5. .Does his doctor’s office have a web portal you can use? I’ve had much better luck with that than trying to call, leave v-mail, etc.

    Definitely. I’ll also text patients or family members with info so they have a record of it.

  6. They used those pills-in-a-pouch things at my mom’s assisted living place. In fact it was required. Of course, the pharmacy that dispenses them that way is specialized, and so all the meds were more expensive than they would otherwise have been.

    Which meds are the problem, Cordelia? Are there bad side-effects? My mom didn’t want to take her anti-depressants because a) she’s not crazy (OMG how wrong you were, Mom) and b) “I don’t want to have to take a pill every day”. I would point out that she’d taken her thyroid pill every day for 50 years. She’d sulk. The docs would be all OMG you have an old woman on Paxil? That’s terrible!! I would carefully explain what “irritable depression” really means, and that I would be happy to find their home addresses and dump unmedicated Mom on them for two weeks and then they could see if Paxil in old people was really so very, very terrible.

  7. I see a huge difference between my Mom and my Dad in how willing they are to listen to their kids. My Mom never saw us as capable. It was hard to help her understand that chemotherapy would work the same way regardless of the quality/emphasis of the oncologist. When I told my Dad that there was no advantage to driving to University of Iowa for anything except decision consultations and to get radiation/chemotherapy locally, as long as he could ensure medical records were appropriately transferred between physicians, my argument made sense to him.

    My Dad sent his pre-surgery hip X-rays to my R&D hip and knee engineer brother, to make sure my brother didn’t see any issues that my Dad should ask about. (My brother has done tons of failure analysis when things go wrong for patients.)

    My MIL is still capable of managing her medical issues, but I expect I’ll wind up tracking her care eventually, even though Mr WCE is her legal decision maker. She knows I have the personality to be detail-oriented in the realm of the mundane, which her sons don’t really have.

    More providers like Denver Dad, who can make medications manageable without sacrificing efficacy, could be a good thing. Better software might help, especially if you can individualize it to patient needs and preferences. I suspect most software is at the stage of recommending the same low cost, poorly tolerated generic 57 times.

  8. We really wanted to do the pillsinapouch type idea, but it assumes there isn’t much change and if, as in Meme’s example, you have to change mid-month, I’m not sure how you do that.
    My mom’s routine is similar –

    Waking – prilosec, except the 1 time per month pill on the 15th, which requires sitting up and no food or drink (other than needed to swallow the pill) for 30 min.

    Weigh yourself

    Breakfast
    breathing treatment
    diuretic #1
    potassium
    calcium
    vitamen D
    blood pressure
    prednisone
    pain pill if needed

    Lunch – Only MWF
    diuretic #2
    pain pill if needed

    Dinner
    breathing treatment
    diuretic#1
    potassium
    calcium
    baby aspirin
    vitamen for eyes
    pain pill if needed
    stool softener

    The diuretics and potassium can be adjusted based on blood work and/or weight gain even daily. Mom is blind and hard of hearing, so I manage the medication and I don’t live in. Yes, it is confusing when the pill change shape, size and/or color. We do not discard the medication as it often cycles back around and/or the amount is 1/2 or 2 times what it was before and we can use up the old dose amount.

    Nothing about oxygen usage is elderly friendly – heavy tanks, tubing to trip in, very small print on regulators, hard to open tanks, etc. With poor hearing and poor sight, and as you age loss of fine motor skill even makes helpful technology less helpful. The technology helps me manage her needs though.

  9. Rhett – Pills in a pouch (my mom had those at the asstd living, because she required medication management ,are expensive, and mostly only used for situations where the pills are locked up and someone unlocks the case to give you the assigned pills at a particular time. However they are not appropriate for constantly changing doses. For DH, they call up and say, skip tonights pill and only a half for the next two days, your bloods were off, and come in on Monday for another test. They could send him an email or portal alert, which he might not get to for a day or two, but they treat it as a bona fide do this today situation and call him on the phone. Fuggeddabout text.

    Ten days ago the primary decided his potassium was too high, called him, and stopped diuretic S. He started to retain fluid (he does daily weights and it went up a few pounds) and BP went up a lot (from 125/70 to 190/105, now a bit better). He was a good do-bee and called in to alert the cardiology team. Took two lengthy conversations initiated by him (second one after wife nagged), finally they paid full attention and today they added diuretic H.

    Cordelia – can you actually blame the parent if medicines are this complicated/expensive/require 4 times a day adminstration/ get changed all the time/have unpleasant side effects?

    For totebaggers at a different stage of life, I can imagine that children with chronic conditions or lots of special services or elaborate sports regimens can present similar issues. I know that my little granddaughter has made life easy for all by holding her own nebulizer (an episode of dinotrux is often used, or a grandma lap reading session). But not all two year olds are that compliant.

  10. My dad would take his meds only when he felt bad and not on days he felt good. He could never understand why he’d only feel good for a few days at a time. These were drugs prescribed for daily use – like blood pressure, diuretic, etc. But, as long as they are competent, you can help them figure out routines, offer to count them for them, or point out consequences of failure to take them, but past that it is their decision.

  11. Anon, why is the dr having her take a diuretic in the evening? It will just have her urinating all night.

    On the oxygen, see if you get her a concentrator. I know insurance doesn’t always cover the portable ones, but they can be worth the cost to be able to stop dealing with the liquid tanks.

  12. Nebulizer for DD#2 was when she got hooked on Rachel Ray…the only thing on age appropriate at the time she needed her treatment. 18 mo to 5 yrs old. Though she did learn that it made her feel better and on days when allergens were high would come ask if it was time. However, her regime prevented us from travel to see grandparents (half the country away) until she was old enough to use a rescue inhaler.

  13. Meme, really try to get him off of warfarin. That will eliminate a huge hassle with the dose adjustment.

  14. I had a 50 year old friend with non afib related warfarin use and he nearly died of clots when they switched him. DH’s warfarin has not been the issue of late, mostly because the new pillbox and his willingness to hand the process over to me means he doesn’t forget to take it anymore. They would increase the dose because they weren’t aware of how many pills he was missing, then reduce it when he was diligent for a week or two. Also, medicare only pays for what it pays for. It is thyroid, potassium, INR, and home BP/weight (he is called twice a month by the cardio nurse), that cause them to fool with dosage or change meds.

    Yesterday he got his new VPAP, and the company made a home visit, showed him all the bells and whistles, fitted him out with the proper mask, and then I popped upstairs to find out how to care for the machine. Email and portal for management and resupply. They do this because failure and non compliance are often related to home conditions that can only be evaluated on site. Medicare does not pay for nearly as much as it used to, because it was a major source of fraud.

  15. DD – 40 mg of furosemide 2X per day now, the MWF is metolzaone 2.5 mg. Potassium varies and adjusted due to blood work. Not sure why 2x per day, but it always has been. On lower levels, it never bothered her at night. It seems to more now though.

    Yes, we have a concentrator at home and trying for a portable one, but as of now still on tanks to leave home.

  16. “Totebaggers, what would you suggest to make life less confusing for elders (or children) and their caretakers?”

    More coordination among providers, and more of them thinking the way DD does, trying to make things more reasonable/easier to follow. I think the segmentation of medical specialties leads you to issues like Meme’s, with multiple specialists prescribing mutiple things, and then one specialist tweaking something that affects something in the others’ areas. I think people naturally think about what is “best” within their specific area of expertise, and no one is tasked with looking at whether the total picture is reasonable for the patient to follow (*I* would have trouble following Meme’s DH’s regime). I think the PCP is supposed to do that, but when the prescriptions are written by each of the specialists, s/he’d have to spent a lot of unpaid time and effort going through everything and coordinating with all those specialists to try to pull something together — and then it would change every few weeks or month based on changes in test results. So in reality, there’s no one who can feasibly look at things from this standpoint.

  17. “I think the PCP is supposed to do that, but when the prescriptions are written by each of the specialists, s/he’d have to spent a lot of unpaid time and effort going through everything and coordinating with all those specialists to try to pull something together”

    I think this is what concierge medicine is promising to do.

  18. The point, that Lauren and AustinMom and RMS and Cordelia and I and others have made repeatedly from experience, is that the elderly need a local advocate or at a minimum the willingness to accept help. No one would consider DH decrepit or addled, but frankly if I were not here he would need to live in assisted living (or a very heavy independent living apt) with 4 times a day medication management, weekly laundry and maid service, and communal dining for one hot dinner a day. He could still drive to bridge and doctors and grocery and buy cereal milk and soda and sandwich fixings. His son could take care of electronics – replacing phone when outmoded, computer problems, setting up the TV in a fairly foolproof fashion – and order him some new clothes, hearing aid batteries, VPAP supplies as needed.

    Denver Dad, I will pass on your suggestion about the new blood thinners to bring up at his next cardiology appt. They don’t consider him to have problems with warfarin (we did bring it up last year), and given his recent stable results they may be right.

  19. My mom is in skilled nursing after her last hospitalization…next on the waiting list for assisted living (it could be weeks or months – keep your fingers crossed for us please)…and is likely going back to independent living with 24 hour care until assisted living opens up. Skilled nursing believes she’s hit her new ‘baseline’ and not to expect much improvement from here. Honestly, remaining in skilled nursing is cheaper than 24/7 caregivers, but she wants out of skilled nursing and money for this for 6 months is doable.

    Meme is correct that an advocate is essential. My mom is where Meme describes her DH (except for driving) 6 months ago. Now, some days just handling the basics of self-care is hard for her. I’m not sure what would happen if she was truly “alone” in the world.

  20. My parents had started to make things difficult and I am not sure how to handle. My father recently had a pretty major health issue. He saw a specialist who recommended he see a different specialist. Wait to see the new guy was long. So they did nothing and waited. Then, it blew up and he ended up in the ER. My mother calls me from the ER crying. During the prior months, they never told anyone what was happening, including one of theirs sons/my brothers who is a doctor IN THAT SPECIALTY. I text my brother (A), he gets it all straightened out and gets my dad in to see the right person almost immediately. When asked why they didn’t at least tell A about this, the response is that they didn’t want to worry anyone. OMG.

  21. Cat – My experience is until they feel out of control of the situation, children are not called into the picture. I think they find it embarassing to discuss their medical issues with their children, aren’t really sure how long they want you in the picture (just for this crisis or ongoing for chronic issues), or how much they want you involved in the treatment/decision making process. Plus, if you have siblings, it is also which and how many children to involve in their care and how that involvement will change the relationship with them and between the siblings.

  22. Cat – My mom didn’t want to worry me during my last semester in college, so I found out she had cancer and chemotherapy after I had finished and her treatment was nearly over. Then she didn’t understand why upon learning the news I was not happy and relieved, but angry and hurt. Parents!

  23. “I think the PCP is supposed to do that, but when the prescriptions are written by each of the specialists, s/he’d have to spent a lot of unpaid time and effort going through everything and coordinating with all those specialists to try to pull something together”

    My PCP asks his patients to bring in all medications, including supplements, to each appointment. When the nurse checks BP and heart rate, she also logs the medications, compares them to previous visit, and asks about any changes.

  24. Denver Dad, I will pass on your suggestion about the new blood thinners to bring up at his next cardiology appt. They don’t consider him to have problems with warfarin (we did bring it up last year), and given his recent stable results they may be right.

    I was reading your posts as the constant blood tests and med adjustments were for the warfarin. If he’s on a stable dose then he shuld only need INR checks monthly.

    Re-reading this:
    Ten days ago the primary decided his potassium was too high, called him, and stopped diuretic S.

    That doesn’t make a lot of sense to me. Diuretics will lower potassium, and some (spironolactone is the most common one) won’t affect it, but I’ve never heard of stopping a diuretic because of elevated postassium. Lasix/furosemide is the first line treatment to lower elevated potassium.

  25. “When asked why they didn’t at least tell A about this, the response is that they didn’t want to worry anyone. OMG.”

    Been there, done that. With my father, it was a stroke. That said, I’m sure I’ll do the same thing to my kids!

  26. I can understand them not telling all of us (including me). What I don’t understand is not telling A who actually knows about that stuff and can help. Plus, when they did call someone in an emergency situation, it was me, not A! Does not compute.

  27. My in-laws used to do the thing of not telling DH about medical issues. As the got older they gave up and now tell all the kids, which piques Oldest Sister because she used to be the information gatekeeper. All very annoying. Now Oldest Sister enlists DH in not telling the parents various things, mostly about Middle Sister and Middle Sister’s disastrous children. Sigh.

  28. I think the PCP is supposed to do that, but when the prescriptions are written by each of the specialists, s/he’d have to spent a lot of unpaid time and effort going through everything and coordinating with all those specialists to try to pull something together

    A big part of the problem is patients don’t bring their updated med lists (or actual meds) when they see the specialists. And same when they see the PCP.

    Medicare now allows us to bill for “Chronic Care management”. If we spend more than 20 minutes a month on things like talking to other providers, phone calls to patients, emails, etc., then we can bill medicare for $42. It’s not a lot, but I’ll do that for at least 10-15 patients a month, so it adds up.

  29. Cat – last year my mom had an ailment that required PT. Did she consult her daughter, a physical therapist? No, she went to a chiropractor. My sister was gobsmacked.

  30. These parents are terrible! I don’t understand it. They call us for all sorts of ridiculous things but not for something important that could benefit from our assistance.

  31. I fully expect DW’s parents to keep all serious medical conditions initially private, as they’re very private people in general. For all we know, they already are.

    When DW called me at work last year in tears, my first thought was that one of them revealed a previously secret terminal illness. No, it was just that her grandmother passed away in her sleep.

  32. Mr WCE and I agreed when we got married that we want to get old like my paternal grandparents. As their memories worsened, they filled in story details for each other more often. They were open to trying new things. They did not comment on aspects of their children’s/grandchildren’s lives of which they disapproved. They refrained from mentioning their adequately educated, unproblematic grandchildren and eventually their happy families to their friends unless it seemed socially necessary. They were frugal but not cheap. They mostly liked each other and had a sense of humor about getting old. (My grandfather on my grandmother: I still remember 60 years ago when she was really cute!)

    The older I get, the more convinced I am that they did many things right.

  33. WCE – As a widow from about the age of 70 (when I was 10), my grandmother used to always say things like “I need to find a new man who’s rich, handsome, and good at sex. But if he’s not that rich, and he’s not that handsome, that’s OK.”

  34. My family is totally different regarding sex. In the words of my college boyfriend, who came from a similarly reserved rural Iowa farm family, “The only way I know that my parents know about sex is that I exist.”

  35. My mom posed nude for a charity calendar when she was in her 60s and she couldn’t understand why my brother and I didn’t want a copy.

  36. I am finding that it helps to talk it over with someone. All of it. I am trying to model being open about things to my kids.

  37. Hmm, I might turn out to be the parent that keeps things too private. In probably need to think about that.

    Have you ever kept things from your kids to spare them? Like not telling your college son that his 13 yo beloved dog died right before stressful finals week?

  38. WCE – my parents were the same, they didn’t talk about it – except that one time my mom told me it was “bad”.

  39. WCE – That’s why this stood out so much. She had similarly shocking comments when I first told her about meeting DW. After that, she really got old, and most of the feistiness is gone.

  40. I just hope things work out to where DW and I live near our kids when we get old(er). I can totally see us relying on DS; DW has been quick to call on him for tech support for years already.

  41. This post is depressing for me because I was able to get way from all medical stuff for a few days, and it was a relief. I was thinking about my mother as I read this post because she is managing most of her own medical care right now, but she is constantly dealing with medication issues for my grandmother. I’ve had to help my mother a lot because she couldn’t walk or drive due to broken bones, but she doesn’t yet have her own medical issues. She spends a lot of time dealing with doctors and medicine for my grandmother. She is stable now, but if just one medication has to be adjusted it can throw everything off. There are times when she admits that she just can’t take it any more when it comes to the care for my grandmother. There is real stress in caring for the elderly, and when you’re already well into senior life – its tough. The conversations between my mother and my aunt are usually tense because it involves some sort of decision about my grandmother.

    The problems that we have now with my FIL are generally due to non-compliance with his diet or lifestyle. He has a very serious case of diabetes, and he has a lot of very serious side effects. He has been “cheating” a lot now that his wife is sick. The reason is that she isn’t always around, and he has more opportunities to get treats in hospital cafeterias etc. DH has been going to some of the chemo, and doctor appointments with them. It’s too many appointments, so lots of cousins have been driving them, or they can drive themselves when they feel ok. Their life right now is all about doctors and hospitals. They see her gastro, oncologist, and other doctors on the days that they are not visiting his cardiologist, podiatrist, or infectious disease doctor.

    One tip I have based on our recent experience to make sure that the list of medicine is written down, or electronically filed with more than one person. All of this information was in the handbag, and brain of my FIL’s wife. He actually had to be rushed to the ER for something when she was in the ICU. My DH had no idea how to access this information while he was in another hospital ER with his dad because FIL didn’t know most of the details. DH eventually drove back to their house, and took photos of all pill bottles. He really was unable to piece everything together until his stepmother recovered from her own surgery and she could fill in the details of his daily care.

  42. Lauren,

    So sorry — it sounds like a nightmare. Dealing with one ailing elder is difficult enough. And it’s sobering to realize how just one little thing can upset the whole applecart for multiple people. When parents in their 90’s have “kids” in their 70’s, sometimes the kids have more medical issues than the parents.

  43. Denver Dad, do you know of any work on what medications support quality of life and what medications are best limited to people likely to live at least another decade?

    My Dad might or might not have worsening prostate cancer but he doesn’t seem too upset, because there’s still a good chance something else will kill him first. An 80-something guy at church was diagnosed with prostate cancer and he and his wife were terrified. I couldn’t figure out why being diagnosed with slow-growing prostate cancer in your 80’s was so upsetting.

  44. Scarlett, thanks. It is a bit of a nightmare, but my SIL is an only child, and she lost both of her parents when she was in her 20s. She always reminds us that it is a blessing to be surrounded by family for so many years. I know she is right, but it is a lot of work right now.

  45. “I think the PCP is supposed to do that, but when the prescriptions are written by each of the specialists, s/he’d have to spent a lot of unpaid time and effort going through everything and coordinating with all those specialists to try to pull something together”

    I think this is what concierge medicine is promising to do.

    And Your Friendly HMO!

  46. I couldn’t figure out why being diagnosed with slow-growing prostate cancer in your 80’s was so upsetting.

    I think having any potentially terminal diagnosis is upsetting.

    An older professor I knew was diagnosed with prostate cancer and he threw a kind of “farewell, I’m going to die now” party. It was very odd. Then he lived another 12 years and published three more books. So his party was a trifle premature.

  47. I plan to give my kids a lot of lists when I get into my 70s. Which watches are worth something and the name of a trustworthy dealer if they should be sold. For medical, I want to let them know the details of how I manage the fine points, such as the fact that my calves itch in the winter, and how I deal with it , or that first pollen means add flonase to the zyrtec. They would have no idea what my normal is if they have to step in when I am sick or forgetful.

    However, I find today in my 60s that my children still want me to be the person who listens to their situations, not vice versa. They are not quite ready to be on call for me. I never ask for advice, because I think that THEY don’t want the changeover in the parent-child dynamic. And parents of an older generation than me just want to pick up the phone and talk if they don’t see you all the time F2F. It takes too much effort to make the decision to ask the child’s advice, then find a quiet time in one’s own life and guess whether it is okay for their schedule, but then it is a voice mail or answered while in the car with the kids. The era of email for that sort of stuff has passed. And if they are expected to go full modern and text to schedule a call, it is really too much trouble for them.

  48. I am sleep,deprived so any medical advice is even more unreliable than usual. I hate the new anticoagulants. They are expensive, irreversible, and have not provided clear superiority to warfarin. I doubt very many people would take them if they had to pay out of pocket, $4000/year. Checking INR is a hassle, but you can buy a good home monitor for much less than the cost of xarelto. If my parents asked me for medical advice, which they don’t, I would have them on warfarin, or nothing.

    Warfarin is used for many things, but atrial fib is probably the #1 use. Primary care doctors don’t say, “if you don’t take this medication, you have a 99% chance of not having an a fib related stroke this year! or a 95% chance over the next five years of not having strokes from a fib.” For patients with a life expectancy of <5 years, anticoagulants can cause more problems than they solve (of course, this is different if you are treating pulmonary embolism or other conditions). The evolution of the private pay health industry has really hobbled our ability of make smart choices about medications. Public/nonprofit systems (in my experience, Hmos, va, ihs) are much better.

  49. Ada,

    Since you are online giving advice, I have a question…

    The last two times DH or I were in the hospital, we got called about an hour after we got home with the hospital saying, “We forgot to do this procedure, come back.”

    Are there some safeguards you could suggest to prevent this from happening without looking like a nutjob? We have thought about developing a checkout list to go over with the discharge nurse, but that seems squarely in nutjob territory. Any suggestions?

  50. And spironolactone can absolutely cause life threatening hyperkalemia. (High potassium). Or so I read on Wikipedia.

  51. That’s weird, Cordelia. I have called patients to come back less than a dozen times over the past decade. Were the two times close together? That would make me think it was because of a new order entry system and orders weren’t being taken off correctly. Or a particular push to get patients out of the hospital, perhaps before morning labs were reviewed? It seems like a system problem. Maybe if I knew the specific thing you had to come back in for (a blood test might mean that they are handling their samples badly and frequently need to redraw). Strange.

  52. The two times were over two years apart. The ER forgot to give DH a tetanus shot after he was run over by a harvester and dragged across the ground. The second time, the doctor had ordered an xray after a procedure, but the discharge people forgot about it. Their main concern seemed to be to empty the bed as fast as possible.

    This is part of my rationale for wanting to be able to talk to the doctor’s when DD goes off to college. It has been my experience that no one should be in the hospital alone, because someone needs to be coherent enough to understand the instructions and to make sure that the medical personnel are paying attention to allergies, pre existing conditions, etc.

  53. “It has been my experience that no one should be in the hospital alone, because someone needs to be coherent enough to understand the instructions and to make sure that the medical personnel are paying attention to allergies, pre existing conditions, etc.”

    I agree. Even patients who are coherent and capable of consent need an advocate who is fully dressed, pain-free, and ambulatory.

  54. “The point, that Lauren and AustinMom and RMS and Cordelia and I and others have made repeatedly from experience, is that the elderly need a local advocate or at a minimum the willingness to accept help.”

    Thank you for educating me on this. Since I’ve never been closely involved in eldercare, I really did not know how this worked.

    Does anyone have knowledge or experience on how well paid advocates work in these situations? I guess in most situations you still need a relative or friend who will oversee the paid advocate. I wonder what the costs are.

  55. What all of you have been going through is eye opening. For me this post is connected to the previous post because my kids need to able to drive and be independent because elder care issues may crop up. Multigenerational families can work only if everyone pitches in, taking into account age and strength. My kids will not be directly responsible but indirectly they will be.

  56. Denver Dad, do you know of any work on what medications support quality of life and what medications are best limited to people likely to live at least another decade?

    I’m not aware of any. I’m sure cost would factor into it.

  57. Checking INR is a hassle

    That’s a huge understatement. The amount of time we spend managing INRs is insane.

  58. Denver Dad, do “minor side effects” and “hassle” count as costs in the medical world? As I look at the risk: benefit analysis, including side effects and hassle, it appears that lots of medications shouldn’t be taken by the elderly.

  59. PSA: Don’t buy Casablanca fans with the fancy remotes and electronic controls. They’re all trouble-prone. DW and the kids are gone, so I’m trying to tackle a couple lingering little projects, but after busting my hump all day at work, this is the last thing I want to be dealing with at night:

    https://www.fanmanlighting.com/repair/intellitouch.htm

  60. DH had afib for years, managed with warfarin. Took his own INR at home and called it in. Alternatives had downsides. DH is 75, had bypass at 47. Warfarin works. Other stuff had many side effects.

    We are in a different place now – out the other side of clinical trials for acute leukemia (result of prostate cancer treatments) for DH. I use a spreadsheet printed out and taped to the med cabinet, MOLST taped to the refrigerator. Too much medication is harmful; a balance is needed.

    We always have the choice to decline medical treatment. Our parents do too.

  61. “Multigenerational families can work only if everyone pitches in, taking into account age and strength.”

    Sounds socialist to me.

  62. Milo, we’ve also had fan issues. I’ve installed a bunch of fans from Home Depot, and have had to replace several, and the one in DD’s room keeps getting wobbly.

    OTOH, the first 2 fans we bought when we moved into our current house were from a specialty fan shop. They cost about twice what similar sized fans at HD cost, but both of them are still working perfectly, with no wobble, and we’re coming up on 20 years. The one in our bedroom gets a lot of use– DW likes to leave it on all night most nights.

    Unfortunately, the company that made that fans no longer exists. The same fans shop we bought them from does, so we bought a couple of fans from them made by Minka Aire. They were a lot more expensive than ones from HD. We’ve only had them a few years, so I can’t give you long-term reliability info.

  63. Finn – I’m a big believer in ceiling fans, based both on thermodynamic/heat transfer principles and just general comfort with gently circulating air. So we have seven of them (each bedroom, family room, porch). The supposedly premium Casablanca brand is great mechanically, with very heavy motors. The problem is that they got in over their heads with the fancy electronics. The selling point is that you can power both light and fan from a single source, then independently control each from the remote. But two of these have been giving me a hard time of it.

  64. “the basic unit of capitalism”

    I thought it was the dollar.

    Actually, I think the nuclear family (and possibly extended famiy) is an example of socialism that can work.

  65. Milo– so has the mechanical part of the Casablanca fans been reliable?

    If so, that would lead me to think a good approach might be to buy Casablanca fans without the electronic controls, if possible, and add after-market controls. That’s what we did with one of the first two fans we bought.

    The fan in our bedroom, which has worked so well for so long, uses pull chains to control the fan speed and the light. I have had to replace the light switch twice, but that’s an easy replacement that only costs a few dollars.

  66. Yeah, the one on our porch, which is specifically made for outdoor use, endures significant temperature and humidity extremes, and it works great–no noise, no wobbling. The light and fan are on separate circuits.

  67. This post is making me miss my parents who live far away. To see how many medications Meme’s DH is dealing with is eye opening. I would imagine my parents medication list is probably similar. When they travel, they have a bag of just medicine. And they don’t stay with us when they visit, and one of the reasons is because of all the medication and the risk of young kids getting into it (their decision). On a good note, in the last few years my dad now travels to a major medical institution a few times a year and the care he gets there is team based with a pcp and all his specialists. At his first visit they took him off of several medications that he had been taking for 20+ years. He didn’t need it anymore, but his past doctors never thought to stop it, or my dad refused to accept that he didn’t need it.

    In fan related news, last year a ceiling fan that my dad installed 20 years ago finally died. He is from the “repair everything first” generation, so he spent a few weeks tinkering with it, then sent the fan away to some small company who fixed it. All in the all, it took 6 months to have the fan repaired and then reinstalled. The price to fix the fan was much more than what it cost to buy a new one. My dad feels like he beat the “system”.

  68. Finn: A nuclear family is a fairly recent development. Extended families have been the norm through history. That said, I’ve seen extended families work and not work in my and DH’s family. When people synch, it works, but when they don’t synch, it can be really, really bad.

  69. The socialism aspect of an extended family can work or not work, as well. The norm that I’ve seen is that 1-2 members (usually sons) work hard and support everyone else. Recently, the nuclear family is becoming more of the norm, as people have a choice to move away (and keep their money, increase their autonomy/privacy, get away from bossy or toxic family members, etc).

  70. <iDenver Dad, do “minor side effects” and “hassle” count as costs in the medical world? As I look at the risk: benefit analysis, including side effects and hassle, it appears that lots of medications shouldn’t be taken by the elderly.

    You always have to determine if the benefits of a med outweigh the side effects and risks.

  71. I have never liked ceiling fans – in this house we took out a whole bunch (maybe 5?). I think it is the fan/light combo that I don’t like, but I also move whenever I am beneath a fan, so I am not a fan of the fan part either (heh).

    Meme, thanks so much for writing this post. I anticipate similar issues with my mom as she gets older, as her list of daily pills is now around 5 (not counting vitamins) and she is only mid-60s.

  72. ‘First Time in Human History’: People 65 and Older Will Outnumber Children Under 5

    Sometime in the next four years the global population of human beings who are 65 and older will surpass those under 5 for the first time, according to a new report from the U.S. Census Bureau….

    Specifically in Europe:

    “Thus new challenges arise: Who will provide help and care to the childless older people?” they write. “On what support networks can they rely? And, what role does the state play in care provision?”

    Some sections of the report:

    Yes, people are living longer, but how many years will be lived
    in good health?…
    What doesn’t kill you, makes you . . . possibly unwell 
    Presence of multiple concurrent conditions increases with age 
    Trend of age-related disability varies by country
    Frailty is a predisabled state… 

  73. The upside of all this is that people of our SES don’t routinely die young and can expect good years of life well into their 80s. Pancreatic/ liver cancer is now the main sneak up on you death sentence. With the cessation of smoking and use of statins and BP meds heart trouble that used to strike down men in their 40s and 50s is managed until late 70s or longer. Many carcinomas and blood disorders are treatable, and some like slow growing prostate cancer are now suggested to be left untreated in older men. What I am seeing more and more in my cohort is joint replacement, rotator cuff surgery, and other orthopedic procedures. All I can say is, don’t delay on those. The older the patient, the more difficult the recovery and the less effective the outcome. Although many people believe that good diet, exercise, and mental activity can delay or prevent the onset of significant cognitive decline (see the description of Alzheimers as Diabetes Type 3), I wouldn’t count on that. If it runs in your family, plan for it. And treat depression/anxiety in the elderly with drugs if necessary. A bit of situational depression in very old age is natural, but anxious or hostile depression can make it impossible for them to function.

  74. Alzheimer’s is going to be the scourge of our generations. Unlike pancreatic cancer, it doesn’t kill you quickly and eventually requires 24/7 care. And in addition to the usual age-related orthopedic interventions, friends in their 40’s and early 50’s have been getting knees and shoulders fixed because of old sports injuries.

  75. I wonder if this demographic change CoC highlighted will contribute to greater acceptance of Death with Dignity laws.

  76. The upside of all this is that people of our SES don’t routinely die young and can expect good years of life well into their 80s.

    The downside of this is that dementia and Alzheimer’s are becoming much more prevalent as people live longer. I’d rather die at 80 than spend 10 years in a locked memory care unit.

  77. DD – I agree. Most of the people I encountered there weren’t living in the current decade. I’d rather save my family the heartache and the expense and go out before things get to that point.

  78. Among my extended family, I see anxiety within older family members, even though they are in good health. I didn’t see this in my grandparents generation because they was lots of family around in case of need. Now, it is different and I totally get that parents don’t want to bother their grown kids so they try to do the best they can on their own, often masking the situation going downhill. I have explained to my kids, that at a certain point, the relationship will change, they will not be “kids” any more but more consultants to their parents. They already see this because though we would have liked to be a nuclear family, we do have parents to think of.

  79. “I wonder if this demographic change CoC highlighted will contribute to greater acceptance of Death with Dignity laws.”

    Especially with global warming making ice floes harder to find.

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