What to do for MIL who refuses to follow doctors orders?
To try to make this as short as possible. My widowed MIL is 76 and has been on dialysis for 5 yrs she has end stage renal failure, heart failure, carotid artery diasease, cataracts (surgery needed) HBP and diabetes for 30 yrs all of which are uncontrolled. She'd had a minor stroke and has had seizures and is a high fall risk. She's on a low sodium renal friendly low sugar diet and finds ways to get foods she can't eat. She's always over on fluids and her BP is very high so her medications get switched alot 16 dif meds. She has 6 kids but none want to help care for her cause she's rude has a bad attitude etc. She's on Medicaid in the long term care program. She gets hospitalized 2-3 times a yr, falls and she's really become a danger to herself. She once pulled out a twix at a drs appt and ate it in front of the nurses. She eats starburst, salty foods, high potassium and phosphorous and they all make her sick and she complains so we're constantly going to doc appts. When we try to control what she eats she yells and curses but her Primary Care doc requires her to have 24hr care so we moved in cause she refuses to leave her home. I left my job and I'm beyond stressed and I cry at night. It's a burden financially, emotionally and health wise. Her son and I can't do it anymore. We're only 40 and 41 w/ 2 kids in college. The social worker from LTC was able to get her into adult day care but the problems got worse now she has access foods she can't have and it's taking a toll on her health. She tells us that we abuse her cause she can eat what she wants and she wants to be independent but at what expense. Our health is worse, our kids worry about us my husband is now on BP meds after a hospital stay her health is on a downward spiral unless I really stay on her but it just creates a hostile environment. Any advice will be great.
Knowing what to do is a big first step.
Doing it is also hard.
One step at a time.
First Try to beat your anxiety down. Try exercise. Walking. Good sleep. healthy diet. Movies. Massage. Therapy. Whatever it takes to let trying to control her go.
Next I would have a talk with DH.
Then sit her down with husband. Here are some ideas. Choose your own from your feelings.
Let her know you love her. You know her life isn’t easy. You find it difficult to be trying to manage her activities and her diet. You aren’t angry BUT you are going to make changes and take steps to allow her the freedom to make her own choices without your running interference on her.
Maybe mention bringing in hospice or palliative care to keep her comfortable. See if that registers at all.
Don’t talk too long.
Don’t raise voices or get upset. You might need to rehearse this a bit before hand.
Just tell her you are sorry you couldnt help more but that you understand, it’s her life etc.
When you read the book “Being Mortal” you will find there are questions that we need to ask and answer about how we want to live out our final years. Here is a link that discusses those questions and how to introduce them.
nextavenue.org/atul-gawandes-5-questions-ask-lifes-end/
My MIL is very stubborn. I really just have to take control of my life back.
I agree with you Mally1 before we moved in her health was alot worse and I don't enable her other ppl at the dialysis center and adult day care give her the things she can't have.
Jeannegibbs I really didnt think it was crazy and I just wanted to do the right thing. I didnt think she should be alone. I just have to let her make her own decisions but it's hard to sit back and watch her self destruct. She has a limited education but she knows the relationship between cause and effect she just doesn't care.
Shane1124 She's on insulin and has known she's had Chronic Kidney Disease since around 2005 so it's not new to her she just does what she wants. Even the SW and RD at the dialysis have a hard time dealing with her. They labeled her as non compliant. Her labs are all over the place and since I'm her caregiver they call me to try to help get them under control. It's just an endless circle. I have to choose my battles better.
97yroldmom I have to read the book and it's sad because we're really just trying to help my husband is over it already since his hospital stay and he says to stop trying just let her be.
I agree, you need to move out. If MIL is low income, you maybe able to get some help thru Medicaid. If she can cook her meals, knows how to take her pills, baths, etc she Doesn't need 24/7 care. Does she drive? My MIL chose to live in Fla. We live in NJ, son in Ga and one in Miss. My husband lived home the longest and tended to be the one who Didn't give into her. She would complain that she never saw us, she moved a 2 day drive from US. She was a stubborn woman and was passive aggressive. My husband said to just let her do what she wanted because she never listened to anyone. You can't force people to do what they should.
Unfortunately one of these days MIL may push the envelope too far & she may have an episode from which she doesn’t bounce back from.
I would give up being the Food Police. Her life, her choices.
Eventually I would bet that she will require NH placement.
You can’t control what she eats. I know there is a dietician at the dialysis center that reviews labs with MIL. Said RD works with the nephrologist who adjusts medication dosage and/or adds new meds to her regimen according to her lab values. The dieticians usually are able to give patients a “monthly report card” with lab results & goals & how the patient is doing. Dialysis patients are on a lot of different medications- as you said, she is on 16 meds daily!
You can only do the best you can and it’s up to MIL to make the right choices regarding her diet.
She also should have a social worker while on dialysis and I encourage you to utilize those two resources- MSW & RD already at her dialysis center.
This must be so difficult for you having her live in your house.
How long has she been on dialysis? Just wondering if this is new to her & she is still learning her new diet.
Does she check her BS at home? Is she on oral diabetic meds or insulin?
You my dear need respite care.
Choose your battles - MIL is aware (hopefully) of her dietary restrictions & is an adult able to make her own decisions.
Diabetes has many many effects on several body systems. If MIL continues unchecked she may develop some of these effects(as you say she has already).
NH placement may be in her future.
You let her go. That’s all you can do.
She is competent right? It’s none of your business what she eats. Stop nagging her.
BUT when she has to go to the hospital etc she goes alone.
Get your job back. Tomorrow.
She could write the manual on all she’s supposed to do or not do.
Has she gotten better since you moved in? It’s not working is it?
She’s focused on showing you that you aren’t the boss of her instead of on what would make her feel better.
Read the book “ Being Mortal: Medication and What’s Important in the End” by Atul Gawande.
I know it’s sad. Give her a hug. Tell her what she already knows.
It’s up to her from here on out and then step back. You are a good person to care and the need is great but she’s been dealing with this for 30 years. She’s probably very tired of it all. Hugs to you and your husband. Come back and let us know how it’s going.
In the US (and I imagine most of the rest of the world) an adult who has not been determined by a court to be mentally incompetent to manage her own health gets to make her own health decisions. They can refuse dialysis, they can refuse surgery, they can refuse to take pills, they can refuse to exercise, and they can eat things known to worsen their conditions. Their health, their lives, their decisions.
"She tells us that we abuse her cause she can eat what she wants and she wants to be independent but at what expense?" She is the one who gets to decide what expense she is willing to go to. Her health, her life, her decision.
You and your husband get to make decisions about your life. "Her Primary Care doc requires her to have 24hr care so we moved in cause she refuses to leave her home." What?! How crazy is that? HER doctor (not yours) says she needs 24 hour care. SHE says she won't leave her home. And based on these people's decisions you quit your job, moved, and are now subjected to rudeness and a bad attitude. I think maybe it is time to rethink your decision.
I assume that you understand cause and effect. You know that crying every night is related to the stress your experience every day, right? And that blood pressure problems may be made worse by living in a hostile environment. My two suggestions echo those of other posters.
1) Stop being your MIL's food police. Help her if she wants you to; otherwise her life, her decisions.
2) Start seriously considering your own lives. In the scheme of things, your lives are every bit as valuable as MIL's. You need to make decisions that have good consequences for you.
You seem like very conscientious and well-meaning people. I'm sure you wouldn't just sneak away in the night and let others pick up the pieces. Do what you can to smooth the transition and see that MIL has access to help. But it is time to make decisions that take in consideration of your own needs.
That's lovely. Are you the beneficiary of a doctor's salary? I'm not. When my mom needed 24/7 care, the three of us kids and our spouses (we're all working folks) shook our heads and told the discharge folks at the hospital that we needed a care center, paid for by mom's funds. If mom hadn't had funds, we would have applied for Medicaid on her behalf.
There is no shame in needing to work. If mom has funds and can pay you for her care, that's great. But you shouldn't give up your livelihoods. Who is going to take care of YOU in your waning years?
I need to add that there is a huge difference between a cooperative elder and one who is self-destructive in the way that MIL is. She needs professional care.
I asked him and he stated that when his mom was sick his wife provided care cause his mom desired to stay at home. He said it wouldn't be easy but it's what my mother in law wants.
I'll talk to the SW about a "needs assessment" and to see what type of care setting is appropriate for her.
When a doctor says that a parent needs 24/7 care, you ask the doctor how that's going to happen.
Talk to the SW you mentioned and tell her/him that you are requesting a
"needs assessment" and help locating an appropriate care center. You and your husband are giving notice, due to doctor's orders re: your husband's deteriorating health.