My MIL, 90 and in good health and mind, has seemingly never-ending visits to her various doctors. I have done the driving for some years, but I have had enough. She has a damaged back for which she has has imaging appointments, visits for shots, many back procedures and follow-ups. Cardiologist twice a year, rheumatologist 4x a year, infusions every 2-3 months, new glasses and ophthalmology appointments, macular degeneration shots 4x a year, various UTI doctor visits maybe every month, then routine stuff as well. At one point there were three visits a week. Perhaps two a week right now. I am sure I missed some in my list.
MIL is in independent living for now, but must use a motorized wheelchair to get around. She is desperate to “get her back fixed” so she can stay, which I understand.
This is insane, and I am done. I haven’t had medical visits for myself in forever—I am burned out from hers. Have any of you just put a lid on the care and said, enough already?!
She has extra insurance coverage, and everything is free with no out-of-pocket. So every new specialist suggested by doctors is fair game.
I have been letting the driver at her IL center take her to many of these in the last six months, but he just drops her off with her walker and she is on her own. She is doing that but it’s not a good plan.
Her own son and daughter (daughter lives far away) are quite willing to let me handle all her care—and think it’s no big deal for me to spend so much time. Their profuse thank-yous aren’t cutting it anymore. I totally freaked them out by saying that when MIL needs to transition to AL, it needs to be near her own daughter. Her son, my hubby, will NOT participate, even when he is off work (he works on a project basis.)
This is is maybe more of a rant, but any suggestions on how to dial this back? It’s gotten crazy, and frankly I just don’t want to do this anymore.
From: ElizabethAR37
My spouse (93) and I (86) make as few doctor visits as possible--maybe even fewer than we "should". Our PCP always wants to make a referral to one specialist or another. Why, when we are unwilling to endure invasive tests, procedures or surgeries? We are very much aware that there is no miracle "cure" for being 93 and 86. We are going to shuffle off this mortal coil at some time in the not-too-distant future; that simply is going to happen. Living to 140 is not on our wish list. Personally, I just don't want to suffer at EOL.
If at all possible, I prefer not to collude with the medical industrial complex or accede to over-treatment. I'm not convinced that they always have an older adult's best interest or quality of life (v. quantity) in mind. After all, they get paid based on coded tests and procedures. To be clear, most practitioners aren't the problem. "Corporate medicine", insurance companies, middlemen and the fee-for-service system are, IMO.
Now that I (voluntarily) try to avoid driving on the freeway--it's way too crazy out there these days--or at night, finding reliable transportation if we need services away from our local area is a challenge. We do not intend to burden our adult children with this task unless it's absolutely essential.
1. Write it all down.
All the tasks I was performing with or for my LO.
2. Then go de-stress. Take a walk, a warm bath, treat myself to a coffee out somewhere.
3. After moving from react & rant mode, get curious. Start asking myself WHYS? Why is this so stressfull? What do I feel? Is this resentment? Why?
It was pointed out to me that resentment was a normal reaction to giving too much.
All practitioners agree she is not a good candidate for any surgery, or extreme treatments to extend her life....so why all the medical surveillance?
If she had symptoms/discomfort/sudden decline in health I would not hesitate to seek treatment for comfort sake.
As it is, her physical health is more stable than my own. 10 routine wellness visits (plus lab appts.) a year is just too much.
Apparently your sister is brought into the system and is now
provided this ridiculous "care". 10 Wellness visisits a year ???????
Who pays for all this ?
I think it's ridiculous how predatory the healthcare industry is with our elders. They seem to assume their elderly patients (and their advocates) will accept without question as many tests and "follow up" appointments as they deem necessary. I agree... it is out of control.
And if you question any of it, including any of the medications they want to keep them on so they can all live to be 140 years old, they get rather huffy.
Seems like a pretty good scam to me.
Also the compartmentalization of doctors and services. For MIL's rheumatologist, there are four infusions each year. Each infusion requires a separate visit to a lab for blood work. If the blood work is off, or if MIL gets sick, another lab visit is required. Medicare no longer allows the doctor to do her "doctor visit" at the same time as her infusion, so those are a separate visit as well. So right there, for just one of her routine therapies, we have about 12 trips to doctors and labs. ALL the things are like that.
"And if you question any of it, including any of the medications they want to keep them on so they can all live to be 140 years old, they get rather huffy."
This is so on point! So they can all live to be 140. Someone commented that over 30% of caregivers die before the people they are caring for. And beyond that, I will almost certainly be moving into a place of ill health, as will my hubby, before MIL is gone. Time for us all to stop trying to cheat death.
Hi all, new to the site but glad to find it.
"I need to get this checked, I need to get that checked," and when she does they'll say, "Yes Mrs. So&So, just like last time we told you to watch your salt intake, not lay in bed so long, and this will improve." But because it's not just going away they're 'not helping' her.
Or if she finds a doctor and doesn't like what she hears, "I gotta find a new doctor he said x,y,z."
She's a frail 90 year old and the other day she told me, "I got to schedule a colonoscopy it's been a while."
No.
No you don't.
When she hears the phrase, "Let's refer you to this specialist," it's like a Christmas gift has been handed to her.
I told her finally that ok, if there is something really bad going on we'll go, but if it's, "I just want to talk to the doctor about...." then it's video visit time. She doesnt' like that and throws a scream down tantrum, but that's that.
out with 3 pills of a sample med. Like if he didn’t leave with a prescription or sample med, it wasn’t worth the trip.
He had COPD and such and would end up in the hospital. Except when he realized he wasn’t going to die tomorrow, he decided he didn’t need to be in the hospital anymore… but still liked being there too. We went to take him home once and we had two prescriptions to fill and we headed for the pharmacy in the hospital. He said “We can come back tomorrow to get them!”. Noooope. Not making another trip for something we can get right now!
I think it would be very helpful to other posters who really want to break free and unsure how to do it.
Years later when he was in AL he broke his dentures. I was led to believe they required him to get implants to replace them so I had to take him to an oral surgeon. After I saw all that was involved I asked if it was really necessary for a 90+ year old man and they said no, they just wanted me to see all the options. Options that required me to again miss work taking him to more doctors.
My feeling about it is if you need someone else's assistance to accomplish any of these appointments to keep you living longer, it is enough.
I now think of it as a seed.
A seed that can grow into anger.
Anger is energy. Can spill out at our family, our spouse, everywhere. Or we can try to harness it & use this energy TOWARDS CHANGE.
Once I made my list of all the stuff I was doing, I got real mad. Felt really used. By everyone else who was happy to let me carry on, that my time was not important to them.
Now I think no-one knew what else to do..
So there I was, the little frog in the heating pot.. no-one interested to turn the heat down, just up up up.
I had to get the strength to jump out myself!
It took me ages to sort this all out by the way, but I did. You can too!
Like Snakes & Ladders, a few snakes there to slide back down.. so I learnt: gotta watch for snakes!
I started with my own list, a sort of 'needs assessment' list. All the tasks, chores, errands, appointments, duties. Then wrote names next to each one. Two of us (third was out) - me doing a bit more than a mouse's amount, the other the lion's.
Basically when you saw the list, it's obvious that LO was no longer independant. Required so much help for ADLs + IADLs. Home Care was involved by then (ooh a hard won battle there..) but a Manager was needed to run it all. Run an *assisted living for one*.
As Weary found, Uber/Taxi wasn't suitable for appointments. More help with mobility than a driver could be expected to do plus more help with communication than an Aide would be expected really.
So basically LO not independant for appointments.
So I kept medical appointments.
But got out a coloured pen & crossed my name off all other tasks.
I stated that all my other tasks must now get a NEW solution. I found various agencies & supports, made numerous suggestions for these. Some taken up, some not.
Then I had to get HARD. Phone calls.. just this once.. could you.. No.
Medical appointments: Doctor. Dentist. Podiatrist. Specialist after Specialist after Specialist. Hairdresser.. One week blew out to near daily appointments!
Some appointments made to fit around my life, some not.
Appointment + post office or shops + clean up at home..
Get the picture?
Mission Creep again!!
Being taken advantage of again.
So next chat was "This is WAY TOO MUCH. It is no longer reasonable. You will need to find another solution. Starting asap.
I arranged a liason with a Social Worker to go over a Needs Assessment & make recommendations. I arranged an OT home safety check. I arranged a Dr review. All agreed: Supported Accom was required.
I really like to know what thoughts go through their minds as they cook up plans to get others to do things for them. What do they think to justify abusing/taking advantage of other people?