"Sandwich Generation" and Long Distance Caregivers:Opinions Please

In My Humble Opinion
1

Are you caring for a senior, or if not actually caring for them are you concerned about how your sick or aging family member is doing? Are you concerned that you either are not local enough, or not available enough to assist with decision making? Are you just lost about where to start with home health options, doctors, physio, medical treatment, etc? Would it help if you had a knowledgeable person attend appointments, explain options and help your or your relative make sense of the information provided? Maybe check on them periodically? If home services are needed which one is the best fit? If you have a relative in a care facility would you like to know his or her needs are being met? Someone who gets an idea of who this person is and was, and that the care staff “get him”.

Would a service that offered to do this for seniors be of use? How much would you want to/ reasonably be able to pay for someone who covered these sorts of services. What would be your concerns about someone who undertook such work? Would you want to pay a contracted rate, or an initial consultation fee and then a fee for service? What kind of things would you want to see if you hired someone to do this.

I am contemplating starting such a business. I am a registered nurse in Vancouver BC, and I have mainly worked with seniors most of my life, in various capacities in hospitals, care facilities, and clients homes. I have also been a caregiver to aging parents and grandparents, and know the system from both sides. I am sure such people exist, but I cannot find really good search terms. Case management, or patient advocate each cover some of what I am trying to achieve. I am in Canada so most medical appointments and surgeries are at no cost, and no copay but things like seniors care facilities, home care and other things do become expensive.

I know you are neither my lawyer nor business adviser. I would never be the decision maker, but would provide decision makers with the information they need. I see the need for this, and I am not sure how I could do this, make money and have satisfied clients. As always, the people who need it most would be the ones who could generally least afford it.

2

Trust.

Why on earth would I trust the opinion of someone who is paid by the visit? How do I know this service is not getting kickbacks from the pharmacy for drugs it recommends.

If you have audio and video of everything that happens in the elder’s home (hospital room, whatever) recorded in such a way that you have no ability to edit it…

There are programs for Home Visits run by insurers or whoever - probably the best approach to what you are proposing.

I had a stay-at-home type sister who moved in to the tiny town where my mother spent her last months.
A brother re-located father to be near him (father had no attachment to any specific place).

3

Good points, all of which I am aware. Also when siblings are not in accord with treatment for a parent, that can be difficult to navigate. I have more experience with that than I would prefer, actually. I also know that for a while a male relative of mine had a “caregiver” who used his place as a welfare address and other scams. I see my role as someone who would get a feel for what is going on. Someone who might go to the doctor with your aunt and remember to tell him “the pills make me dizzy when I stand up”, and tell the doctor her blood pressure has been low every week when you visited. (If a weekly visit was the arrangement.)

I don’t know the whole situation with American health care. Here often home care happens either as an exclusively private pay system, or the local health authority has services for seniors at home on a limited budget. (I. E) you get 16 hours per month. Sometimes people can’t express what they need in terms the system listens to. People who know the system may realize you can get those sixteen hours per month broken up in different ways, or what to say to advocate for more hours from the Health Authority. Maybe your mother gets Meals on Wheels, but doesn’t like to answer the door for strangers and won’t answer if the usual gentleman doesn’t come that day. If you couldn’t be there, how would you know, and she would say yes I eat my meals that are delivered, but not realizing that now she doesn’t eat them on Tuesdays and Thursdays.
How to build trust? Well I have credentials, my lived experiences being an at hand and long distance caregiver, and nearly 20 years as a registered nurse. I am registered and thus my license can be checked at any time. If people need to be hired I would probably recommend 2 or 3 that meet the needs and have client/caregiver make their choice. The thing is, I would already know what companies offered what services, why “Main Street Home Health” might be good for Mrs Jones, but not for Mr Smith.

4
  1. Are you caring for a senior, or if not actually caring for them are you concerned about how your sick or aging family member is doing?

Sure, who wouldn’t be concerned about the wellbeing of their own family members?

  1. Are you concerned that you either are not local enough, or not available enough to assist with decision making?

Certainly it would be best if I could be in the same room as them in order to truly know what is going on, but that is what phone/e-mail and pre-arranged instructions are for.

  1. Are you just lost about where to start with home health options, doctors, physio, medical treatment, etc?

There are a lot of options out there, but they all boil down to time/money/insurance restrictions. Through the power of Google, shopping around talking to those services directly, and actually reading their contracts, I think we did well enough.

  1. Would it help if you had a knowledgeable person attend appointments, explain options and help your or your relative make sense of the information provided?

Sure it would be great to have some kind of neutral third party Senior Care Lawyer and Advocate that knows all the information for all places and circumstances; but where would that person get their information from? Some place greater than the University of Google and more impartial than the senior care center’s HR department? How would I know that they speak truly to me, or how could I trust anyone that is not stringently regulated/tested by the government?

The care homes and doctors and everyone else already does their own explaining, and they do try to help you make sense of their information. How would your service be any different than if, after I heard their side, I just waited on choosing and went to Google for my second opinion?

  1. Maybe check on them periodically?

I would hope that the care facility’s staff did that regularly every day. You mean something like a 3rd party coming in every so often to check that the care facility is not lying to me or stealing their stuff?
6. If home services are needed which one is the best fit?

Yes, how would your people, freshly hired into this new business of yours, find deeper relevant information about every home service, weighed against every insurance type, and level of care required, etc in order to come up with an objectively better assessment than what one person and the internet can do? Now I do agree that a service that cuts through phone-trees and expedites paperwork and e-mails is needed; but why should I ever trust your company with my sensitive information that I would have to give you in order for your people to act on my behalf? Now again, if there was a way for me to first call a place that has a long wait time or confusing phone-tree, hand off the waiting to your people, and have you re-call me back and re-connect me when your people got through the garbage… That would be useful. Like how in Mexico they have professional line-waiters that sit in line for you (for days/weeks even) and call you when your spot is near the front so you can take your place back. Only this version would be for bureaucracy.

  1. If you have a relative in a care facility would you like to know his or her needs are being met?

Yes, sadly for cheaper nursing homes, a 3rd party nursing home oversight body is needed to stop elderly abuse and shut those places down (but where would the now dispossessed elderly stay?)

  1. Someone who gets an idea of who this person is and was, and that the care staff “get him”.

If you have some sort of wonder drug that injects empathy and patience into people, you don’t need this tiny business. You would already be a god.

  1. Would a service that offered to do this for seniors be of use?

If your service was likened to being a Hollywood “Fixer,” the people you called up to take care of problems that lawyers can’t fix, that would be illegal. But always sending things via registered mail gets expensive. Being given the run-around by uncaring drones wastes so much time. You might have a lucrative future if you partnered up with the families with parents in cheaper care facilities, that way you could go in randomly and regularly document cases of fraud/abuse and wring the money out of them in class action (your relevant clients) lawsuits.

  1. How much would you want to/ reasonably be able to pay for someone who covered these sorts of services.

I don’t know, this is sounding more like the birth of a new private oversight organization that would have to be backed by your government

  1. What would be your concerns about someone who undertook such work?

How can you prove that you are “certified” to do this work? What extra layer of research or knowledge do you have that is not in the hands of the masses already? How do I know that you are impartial and not in the pockets of certain care providers? What training/skills do your people have? How often, and how in general, is your collected information on care facilities/insurance/elder needs/etc all collated and made sense of and updated and fact checked?

  1. Would you want to pay a contracted rate, or an initial consultation fee and then a fee for service?

I personally would want to not pay you anything. I would have you be another arm of the government’s oversight into seeing that the field of elder care is purged of abuse. Or at most, I would expect you to take your cut of the money only after we win our elder care center abuse cases in court.

  1. What kind of things would you want to see if you hired someone to do this.

Just as you say, the ones who most need this are the ones who can least afford it. So then find a way to accept the Government’s payments on medical treatments (sorry, going off USA, so Medi-care or Medi-cal or Veteran’s healthcare, etc… all the ways that the Gov pays to keep the poor alive) and don’t reach into our pockets individually, but collectively through the government’s subsidy.

5

I was under the impression that there are quite a few companies that provide these kind of services already? Everything from a quick daily “checkup” to companies that provide assistance with activities of daily living, including shopping and driving to outings?

6

Yes but this part is far more unavailable “Would it help if you had a knowledgeable person attend appointments, explain options and help your or your relative make sense of the information provided?” to most people. It’s basically what the center I work for trains people to do - systems facilitation - but rather than the elderly it’s for people with IDD and a co-occurring mental illness.

We get more inquiries from states who are interested in the program than we can accommodate, so I can see this being a need for the elderly too. Being a one-person operation rather than a center would be difficult, though. Our folks go through a year’s worth of training in mental health and intellectual disability, and are coached on writing plans, but I don’t know of a certification program to do what the OP wants to that’d prove her knowledgeably.

7

I don’t think there is a “qualification programme” to do what I envision. Quite simply, I have been working in health and human services for 27 years. Every service I see offering is something I have either done personally, professionally, or been involved in the process. I’ve had the day where I left a 12 hour shift at work only to pick father on law off the floor

8

(Sorry hit post too soon,) go with him for stitches, then get him settled and go to bed because I work again at 7 am. I have learned and listened to my clients, their families, my family, my friends with aging parents. I know that sometimes it’s "if someone would just talk to Aunt May’s doctor, but how can I from half way across the country? " Or my mom says the lawn company hasn’t been there all summer. Could you follow up? Or Dad is usually in bed when I see him in the evening. They say he had a bath, or was tired today. Is it a usual practice? I can only get there once a week.

I see myself as the eyes and ears of the caregiver. The one who knows the things you don’t know that you don’t know. The person who’s job it is to make sure your loved ones needs are being met. That they are comfortable and happy and treated well.

Imagine your friend, the back yard mechanic who listens to the funny noise your car makes, tells you what he thinks might be and who will know for sure. He may not be able to fix it but he can tell you if the estimate sounds reasonable and if he thinks they did a lousy job he can can tell you how to complain. I want to be that person; for seniors care. And somehow create a living more than “Hey I owe you one” and a six pack of beer. Not working for a company, I keep my impartiality, my independence, a personal touch. Working from home, my overhead would be low. This is what I would like to do. But some posts here make me think either this is impossible or I’m delusional or I’d be viewed cynically from the start. I’m not discouraged, all feedback is useful.

9

I’m struggling with how you would get the word out. I’m guessing the market for this service is fairly small when both the elder/sick and the caring person live in or near the same city. So you and the elder/sick person are in or near city “A”. The caring people you need to market to are, potentially, everywhere in the world besides city “A”. How does your message reach them? Or do you market to the elder/sick and then report to whomever they designate? Who pays you, the elder/sick or the caring person?

I like the concept, but the logistics are…interesting.

10

Sounds like you want to open a business as a care manager. I used one to help get my parents assessed and settled into a nursing home that would suit their needs. She was a godsend, because she knew all the nursing homes in the area and could recommend good ones, and also knew the entire process for applying and moving them in.

11

I’d engage the services of someone like this in a flash. Mother, early 80s, lives by herself in an apartment 4 hours drive away. Mostly she does pretty well. Except when she doesn’t. I can get up there on short notice…usually, but not always. Also, she can go from just fine to needing emergency help pretty quickly, and she is always inclined to tough it out and not give us full information in a timely fashion. and she is not keen to have the public health care people pop in for regular visits. They have rigid schedules, big case loads, and strict guidelines about what they can and can’t do.

And there’s the issue of my not knowing a lot about how the system work. Yeah, the Internet tells a lot, but there’s a huge difference between the web page and reality sometimes, and you don’t find that out until you’re stuck in the mud.

Trust would be an issue, but heck, it is with the person who cuts my hair–it’s about building a relationship.

So, yes, I could definitely make use of what you’re offering. Now, if you could move to my mother’s town…

12

And we’re in the same province…

13

:smack: sorry if my last comment sounded creepy: I only meant to joke that if you could move, to where my mother is, it wouldn’t be that far.

I think your idea has real possibilities.

14

Trust was my first thought, but word-of-mouth will take care of that once you’re established. Plus, you certainly sound like you know what you’re doing. While I think it’s a bit of a niche market, I’ll bet there’s demand there.

Regarding doctor’s appointments - my mom belongs to an organization for older women, and one of the cool things they do is volunteer to accompany each other to appointments if needed or wanted. Maybe someone needs to have help getting home and settled after a simple outpatient procedure, or just wants moral supprt and another pair of ears when going for what might be a bad diagnosis. So there’s definitely a need for that sort of thing. Naturally, having a professional there would be even better…

There are certainly obstacles, and folks in this thread have made good points. I do like the idea, however.

15

People who work in related fields often have personal experience and knowledge of other services. If I need bodywork done on my car, I ask my mechanic where to go. If I need a cardiologist, I ask my PCP. If I need an oral surgeon, I ask my dentist. Hospital staff, especially nurses and social workers are likely to know which nursing homes/agencies in the area are good and which are hellholes, based not on what Google or the agencies say , but on what other patients and their families say when they end up in the hospital.

16

Absolutely there is a need for this. I can think of a few more tasks you may want to consider offering. One of the most frustrating parts of my job as a home health nurse is when I have to discharge someone because they don’t have an acute Skilled Need, but they need someone to fill their pillboxes weekly, call the pharmacy when they need refills, call the doctor when they’re having a problem, take them to medical appointments, do routine non-skilled wound care (I can only do prolonged wound care for wounds that are changing or require prescription wound care products or sterile technique, but I can’t keep coming forever to bandage a stable nonhealing venous stasis ulcer, even if you can’t reach your legs and have no one to do it for you.) These are things that Medicare says are not Skilled Needs, because I should be able to train a caregiver to do them, and not having a caregiver doesn’t change them into Skilled Needs. They’re also things that most homemakers/ nonskilled caregivers or CNA’s won’t do. It’s a significant gap in care.

What ends up happening more often than not is I discharge them, they get worse, end up in the hospital, are sent home a week later, and then I can go back because they’ve gotten sicker and now have a Skilled Need. So I work with them until they’re back to stable and no longer have a Skilled Need, and then I discharge them. Lather, rinse, repeat. Stupid system. I hope Canada’s is better.

I’d actually love to do work like you’re proposing, either in addition to or instead of conventional home health as an RN.

17

Yes, Why not those little cracks in the system is where I would like to either fill the need myself or find a source to do it.

It is all basic Case Management but with a personal touch. Right now I live in Metro Vancouver, buy my parents live in a small community on Vancouver Island where there is a high population of retired seniors. I could see this working very well there.