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.
Please correct me if I am wrong.. Sweet by name and nature ❤️ but is caring so much, hurting you too much?
A caring heart, high empathy has led many into the nursing profession I guess although RNs come in many shapes, size & manners. There are those who love to be the bossy in-charge & are the same with their family. (Have a SIL like this - going mad trying to keep her Mother compliment. Takes every no, or passive hidden no, as a personal affront).
This could also be a perfectionist streak showing?
Now another relative is very empathetic too but has a social worker core. Gives a choice. Let's it be. Close but not so emotionaly entangled.
The health profession is vast. It's ok to move roles. If RN for the masses is no longer your cuppa, education sounds really good. I hope you enjoy this. But if not, keep looking for a good fit for your skills, somewhere you contribute but it doesn't suck too much life from you.
Did I read Mother is a stroke survivor? So it may be hard to know when she won't do something vs can't understand something?
I think your sweet nature will be a blessing to your Mother. Maybe just tweak things to nurture yourself as well as her ❤️❤️
This is my aim - would it work for you?
Look up from the 'day view' regularly. From the list of medical instructions, medicines & appointments to check the 'month view' or even 'year view'. What's REALLY important? What will enhance quality of life? Is the cure too cumbersome to be of value? And later on, when needed, a curative approach can move slowly towards comfort care.
Peace to you.
Yes, my username is Sweetsoonergirl. (I graduated from the University of Oklahoma, Sooner Born and Sooner Bred). I went into nursing because I care about humanity and wanted to make the world a better place. Unfortunately, I have found that corporate nursing does not care about their employed nurses, not their well-being anyways. I worked at one of the best hospitals in the country. But when they didn't support all the radical changes in my life such as my mom almost dying, I decided it was time to move on (they were really cruel about it too and told me I should quit my position). I moved out of patient care, as between work and managing my mom's stuff, it was sucking the life out of me and my marriage.
I'm hoping to stay somewhat in nursing, at least with student teaching. I'm also looking to do something more health promoting and wellness led. Not sure what that will look like just yet.
My mom truly believes that she is using her CPAP 4 hours a night but she seems to be rounding it up to 4 hours if it's just under 4 hours. So if it gets to be too much for her after 30 days, I will take the CPAP back. And if she argues about keeping it, I will get my brother involved who manages her money.
Yes, at this point, I've accepted that my mom and I just have a different relationship. It's better after our talk last week. But I know it will never be the mother-daughter relationship I desire.
My dad passed away almost 8 years ago and we were so close. He was a very nurturing parent. It's been hard on all of us for sure. But I was hopeful that maybe my mom and I could eventually have that level of a nurturing relationship (this is before I realized that my mom was likley autistic which I just figured out a couple years ago).
I truly just want the best for my mom. I do have a tendency towards perfectionism (which usually kept my mom happy when I was a little girl if I just did what I was told and kept my nose in the books). I do get triggered when I'm around my mom (my younger self comes to the surface). But I'm working on that through an empath course.
I will say, being an empath and being raised by an autistic parent has had its challenges.
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.
Though, I just talked to my mom and she says that she's using the CPAP like she's supposed to. So I'll give the assisted living staff a chance to help her with the device. I will be seeing her tomorrow for my weekly visit and will check out device for myself.
We've been following the advice and orders of all her physicians. So unless she tells me that she doesn't want to do something, I've been advocating for her to proceed with recommended treatments.
Thank You for your response and support.
I'm not sure she can afford a regular manager of things outside of living in assisted living. The pandemic has caused a lot of staffing issues everywhere including where my mom lives. Technically, they should be able to help with transportation to appointments but lack the staff to do this for residents. That's why I have to arrange transportation for all her appointments.
I've messaged my mom's pulmonologist to let him and his staff know that the CPAP may not work out. So if she continues to be non-compliant, I'll just return the device. Just manage her care with medications and routine appointments in her home until end-of-life care.
She's at least happy where she lives. She more active than she was before and seems to be mentally and emotionally thriving. So that's something.
***Just got off the phone with my mom. She says she's using the CPAP like she's been told (at least 4 hours including 4 hours Friday night, 4 hours Saturday night and 5 hours Sunday night). So I will give the assisted living a chance to supervise her use. I will also be visiting with her tomorrow for my weekly visit so I will check on CPAP myself.
Been doing my best to follow the orders and guidelines of all her physicians. Just a lot to keep up with. She's been verbally agreeing to everything so far so I've been advocating for her to proceed with treatment.
Thank You for your response and your support.
The old "No I won't use that" as a cover up for the real reason.. 'I can't remember how to use that' or 'I might do it wrong'.
I know people that wouldn't wear hat, glasses, hearing aides or even a collared shirt because these items feel funny, invasive or choking. Sensory issues can be a big part of Asperger's, but not verbalised.
CPAP are very invasive. I am wondering if the feel of it invokes high anxiety?
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.
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.