My mom has a hx of non-compliance which led to her stroke almost a year ago. I tried to warn her about her irregular heart rhythm leading to a stroke, even drove her straight to the hospital I worked at when I picked her up from the airport 3 years ago.
I suspect my mom has a Aspergers but was never officially diagnosed (she's 73 now). My dad passed away from leukemia in 2014 and I was very involved in his care too.
I have one other sibling, an older brother, but he lives out of state. So I don't have him physically here to help me.
My mom lives in assisted living. I'm thankful for that as we'd just butt heads if we lived together. Though anytime something comes up (which is often due to all her comorbidities) it's my responsibility.
I'm in my mid-30s, married and still trying to have my own life (and career). My dad died when I was 28 years old. Never thought I'd have to deal with all of this responsibility at a relatively young age.
I'm burned out on caregiving. Not even sure I want to be a practicing nurse anymore. I've stepped away from patient care but still work in nursing education.
My mom recently got a CPAP machine last week. We had a thorough appointment on how to use it and all the maintenance. Then upon returning to her assisted living apartment, I had her demonstrate how to use it. I encouraged her to call staff for help if she got confused on how to place the mask on, turn on device, etc.
Three days later, I got a notification that my mom has been non-compliant with the CPAP. I got in touch with her assisted living. I also messaged her pulmonologist's office of what's going on and her hx of non-compliance.
I don't know if she will be compliant enough to keep her CPAP. I feel like her non-compliance is a reflection of me, especially as an RN. I used to work at the hospital where most of her appointments are located.
I just want my mom to have a good quality of life and be happy. There's so many appointments between heart, kidney, lung and urology. I can't even take her to all her appointments since starting a new job.
I want to live my life separate from my mom. I went off to college and paid my way through school. My parents didn't have the means to pay for my schooling. I did all this to be independent. And I'm married and have a career.
I just want to make sure I'm doing enough without wearing myself out. I also have back issues and recently got diagnosed with an autoimmune disease. So I have to be careful how stress affects me.
I feel like I'm neglecting my mom if I just let her live how she wants to. But when it comes to life and death (like with her stroke) that's when she'll want my help.
I know I need to enforce healthy boundaries for my health and sanity and for my husband's sake also.
I don't feel like I should have to bend over backwards for a parent who has been non-compliant. I've tried to rationalize with her and educate her (several times over the past 15 years between nursing school and being a nurse).
I feel like I had to grow up fast and outgrew my mom when I became a teenager. She didn't understand why a girl wanted to go off to college and have an education and career.
I really just want to live my life completely independent from my mom. I also want her to be happy. I am her medical POA so there are times I have to intervene. I manage all her appointments and find transportation when I'm not able to take off work.
My mom doesn't understand that her noncompliance affects me (yes, I've told her several times). But I don't know how to do enough without jeopardizing my health. And it still may not be enough.
Your mother lives in AL for a REASON. USE the services that are available TO you in the AL. Use the in-house doctor who will see her THERE on the premises rather than all these 'specialists' who require trips outside the facility. Because guess why? She's not going to follow their directions ANYWAY, so why are you jumping thru these fiery hoops to get her medical advice that she is going to ignore? Expecting a person with dementia to follow medical rules is ridiculous anyway. Expecting a person with dementia to remember how TO follow instructions is another exercise in futility. Wanting to extend their lives in any way is, in my opinion, another bad idea b/c their quality of life gets SO bad that it's a horrible thing to witness, AND a horrible thing for THEM to live with.
Leave your mother alone to do as SHE sees fit with HER life. She doesn't want to wear her CPAP? Fine. You can't make her happy! Rid yourself of that notion immediately and you'll feel a load LIFT off of you instantly. You want to live life completely independently from your mom? Then DO SO! She's in AL; allow the staff in the AL to care for her! Use their services for her care; set it all up NOW. Release yourself from being mother's nurse that you've taken on willingly! It's not YOUR job to BE her nurse! She's paying handsomely to have OTHERS nurse her! Let them. Go back to being her daughter instead of her nurse.
It's hard enough to be a daughter to a mother like this, never mind trying to also be a nurse, an educator and an enforcer of The Rules. It's impossible, actually, what you're trying to do so that's why you're frustrated & burned out.
Take my advice & back up a bit; reevaluate why mom is in AL to begin with. Rethink your role in this relationship and allow the staff at the AL to do what you've been trying to do for too long now. Let mom live HER life as she wants to. If that cuts her life a bit shorter, so be it. You are not 'neglecting' her by allowing her to live HER life on HER terms; you're allowing her the freedom to be HERSELF. And you're giving YOURSELF the freedom to live the life you deserve to live.
Good luck with all of this; I know how hard it is to let go. But once you do, you'll be happy you did!
I think part of my mom's reason for her non-compliance is due to her likely autism (because she was non-complaint before her stroke). She doesn't understand that she has consequences as well as anybody for not following doctor's orders.
Yes, at this point, I just want her to have a good quality of life. I'm planning to minimize her specialist appointments to just her cardiologist and nephrologist (since she has heart failure and kidney disease).
That’s a difficult thing to do for me and most people but you’ve probably experienced bonking heads (re: logic and instructions) with patients, caregivers, and families before and had to take a step back a number of times during your tenure as a nurse. You may be better at it than you remember at the moment.
I read your post twice, and I do get your deep hurtful, on your last nerve, conflicting situation, but the thing that stood out most to me was the repeated - I want, I feel, I want, I feel and I want to be independent.
I know it’s tough. Good or bad, it’s your mom after all, and boy oh boy do I get good or bad, but it seems that you are very much like her. How many times are you going to bang your head on that desk? You’re not listening to logic either. You already know what to do, too. You’re not complying to what is healthy for your life, and your marriage either.
I’m not saying don’t want and feel. Wanting good health, comfort, protection for someone outside of yourself is probably your nature and what lead you to your career choice but you’re trying to poke a hole in water here. She hurts herself (for attention maybe or non-intentionally) and you hurt yourself too for your reasons.
Calmly lay it out for her (and yourself) what you expect from her, and tell her what you both can reasonably expect from you. Let the people being paid for her care to do the job. Monitor them kindly with reasonable expectations. I know it's not always perfect.
I'm with you. It's good to want the good for someone else especially someone so close to you. It's normal to feel bad about a situation. But you’re getting yourself nuts and I'm sure you’re affecting your family more than you know.
You know a lot about the subject of healthcare and what may be better for a person and that makes this an especially mind numbing crazy making situation for you.
Visit your mom with a couple of magazines and a couple of bottled Lattes (I’d take a chamomile tea. Not always fond of it but it does work). Go in ready with a couple of tunes on you iSomething and say, Hi mom. What's up? And peace out in your mind.
When she doesn’t use her Cpap, etc., sweetly say - Oh I was hoping you’d feel better with it. Then turn a page of your magazine.
I heard a smart person say, “Not everything can be fixed”.
When I worked in the hospital setting, I could leave my patients at work. Anytime something comes up with my mom, I'm the one who is notified. I think that's one of the reasons I have felt triggered to do everything I can to help her. But I'm also learning that I'm limited (yes, I did read my post a few times after people responded).
I also suspect that my mom is autistic (and this was before her stroke). My mom and I have never had the typical "nurturing" mother-daughter relationship. She didn't help me with prom, graduation or my wedding (I think she was overwhelmed with wedding details) though I offered several times to have her help and just spend quality time together. But my mom never got it. I just figured out a couple of years ago that my mom is likely on the autistic spectrum (would have helped to know this about my mom while I was growing up).
And especially being the medical professional in the family, so much expectation is placed on me from others. But I'm also learning what expectations are reasonable and realistic.
I have reached out to the assisted living to check on my mom and make sure she is using her CPAP. They are, unfortunately, short-staffed due to this pandemic.
I've decided that if my mom doesn't meet expectations in 30 days, the CPAP will be returned.
My mother probably needed a CPAP, but we knew there was no way in the world she'd use it even once. We didn't push her, and she didn't get one. She lived another seven years in spite of that, so I wouldn't stress out about your mom either. She has a right to make her own choices. Just get that monkey off your back, and it'll help your stress level immensely.
So as a child, it was hard to not take things personally. I didn't understand why my mom got so upset with me so easily. I didn't understand why she didn't help me with prom or with high school graduation. Even when I was getting married, I offered several times for her to help me plan my wedding and have quality time with her. Three days before my wedding, I arrived home with my wedding dress and decorations. Instead of my mom being excited about seeing me dress, she asked me why I brought so much stuff home.
So I've been triggered by years of hurt. I love my mom and want the best for her. But it's been complicated. And it's been more difficult after my dad passed away because she was so dependent on him.
I thought I was doing the best for her by getting her a cardiologist (due to her heart failure), had to take her to the hospital twice within a month of moving here due to severe shortness of breath with any movement and extreme swelling to her lower extremities.
I do plan to minimize how many specialists she sees (hopefully only her cardiologist and nephrologist - she has kidney disease also). Then hope to have the rest of her care taken care of through AL.
But you have no responsibility for your mother's choices. Not even in your position as an RN. They are hers and not yours nor anybody else's. They are her property.
Take the CPAP frustration as a worked example, and run at it from the other end - defend your mother. You may disagree (do disagree, rightly disagree, have disagreed and honestly endeavoured to teach her better) with her refusal to wear it BUT as her advocate and especially the advocate for her quality of life you must defend her right to refuse. Her right to sit on her hands. Her right to stick her head in the sand.
And then if she has a stroke (God forbid another one) or other major event and she comes running to you... you don't say "well don't come running to me"!!! Of course you wouldn't. You commiserate and you help her adjust to the consequences, but you Let Her Deal With Them. She is the one who will be paraplegic or blind or demented, not you, and you will be sad for her. But you will not, NOT, be responsible.
You are also qualified to know very well that a person with your mother's background personality and current health condition is not capable of conducting or receiving rational arguments. Stop banging your head against that brick wall, at least :)
I think you're wise to have stepped back from hands-on nursing at this stage (careers are long - who knows where yours will take you?), because professional burnout can be spectacular. The niece of a client used to work for a telecare company as a first responder, and she now has full-blown gerontophobia, no joke. Has to turn round and leave the store if there's an older person standing in line, seriously. It was hard not to laugh when my client told me about it (the niece isn't affected by her) but when I stopped and thought about what a typical 8 hour shift in that job might involve it was sobering.
Anyway, feel better. You are doing everything right, I think, you just have to give yourself permission for the results to be your mother's responsibility. (Re-)read "Being Mortal," perhaps.
Add a dollop of disinterest in her own situation and it means even more for you to keep track of.
Unless there’s a certain amount of self motivation I’m sure you’re aware that management of a CPAP unit is at very least cumbersome.
Although you don’t feel as though you should have to be highly involved as her caregiver, you remain highly involved, and by doing so, neglect yourself.
So, COULD she afford a manager of some sort to assume some of the responsibilities that you attempt to do now, without your mother’s cooperation? Adults will sometimes do better when encouraged by a non interested party, to do things to help themselves.
Your situation isn’t fair, but it sounds as though you won’t get any farther by continuing as you are now, and you will have to be the side of your partnership who has to figure out bottom line basics for her safety and well being, and how to achieve basic simple goals to achieve those goals.
As a starter, would she be eligible for the simpl(ish) surgery that could relieve you of responsibility for CPAP?
Be good to yourself and your husband, even if you feel as though your not being quite as good to your mom.
Thank You. It helps to have others' perspective. I have reread my post a few times now and realize how limited I am as a human being and that's okay.
I would review her doctor visits. Does she still need to have regular visits. I found once Mom was stable 6months to a year was OK.
I think you are asking too much of Mom. We can't control what they will or won't do. I can't imagine trying to sleep with a CPAP. I know people who have stopped using it. Your going to go nuts trying to control her. As a Nurse you know by law you cannot make a patient do what they don't want to same with your Mom.
I think too that my mom was quite dependent on my dad. Even after he died, she didn't know how to change a lightbulb in a light-fixture.
As a teenager and into my 20s, I thought my mom was just lazy. Then a couple of years ago, I realized my mom is likely on the autistic spectrum, especially after getting to know my husband's younger sister.
I'm going to give her 30 days to be compliant (I think that's what her contract shows). If she doesn't get the hang of it by then, I will plan to take the CPAP back.
Agreed. I'm hoping that she can just have her urology appts once a year at most or maybe just transfer care to her doc at the assisted living. Maybe just keep appointments with her cardiologist and nephrologist since she has heart failure and kidney disease.
Thank You for your feedback.
My mom told me a couple of days ago to not worry about her. I really believe she meant that.