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.
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.
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.
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?
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 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.
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 am confused by who is reporting mom's non-compliance with the C-PAP and mom's self-report that she using it as instructed.
I guess if you have cameras in her room, you might know for sure.
But here's the thing, with dementia, especially Vascular Dementia, the ability to "know" how to do somethings waxes and wanes. At least it did with my mom.
She would NEVER have been able to figure out how to use a CPAP.
It sounds like there are significant issues in play between you and mom. You felt un-understood as a child (me too) and parentified at an early age. Frankly, these are good reasons for you not to be so hands on with mom's care and to try, whether by force of will or through therapy, to stop identifying so strongly that you need mom to be the "model patient".
You can't make mom happy. That's her job. And you can't care more about her health than she does.
I understand that you need to step in when things go south, but as mom has dementia, I would aquire a good geriatrics doc and lose most of the specialists.
She is a little bit more forgetful with her stroke. I also suspect that she has a high level of autism, especially after getting to know my husband's younger sister.
Yes, over the years, my mom was not very nurturing. She would often take things out on me when she would get overwhelmed (often by yelling non-stop). And as a little girl, it was a bit confusing especially as a tender-hearted individual (highly sensitive person). She also had no interest in helping me shop for prom, prepare for high school graduation or even plan my wedding with me. I had to reach out to others for help and support.
My mom is also very good at dates. For instance, if you just meet her, she will remember your birthday as long as she knows you.
When I went off to college, I was like, "So this is how moms and daughters are supposed to have a relationship." I went home a weekend and took her out to lunch. She acted disinterested and would just give me one word answers (that's something my husband's sister does). I tried several times after that to have a better relationship with my mom but it just never really happened.
I did have a good chat with my mom the other day. I'm coming around to find that she is who she is, autism, dementia and all. Just reinforcing better boundaries for myself.
So, I'm at the point that if she meets the criteria with her CPAP, Great! If not, I will take it back after the 30 days.
Then there is across the board non-compliance in CPAP patients.
Saw this: 4 hours per night, 21 days per month counts as “compliant,” yet rates of CPAP compliance have been estimated as low as 17%. All of these non-compliant or intolerant CPAP users are not treating their condition, choosing instead to live with the symptoms.
Sending someone to supervise and administer the CPAP could be needed.
Some AL have caregivers (work privately for the patient, not employed by the AL). Ask around. Her doctor may be able to order CPAP treatments and sending a qualified person may be covered by insurance.
Because of the waxes and wanes, it is hard for you to determine if your Mom requires more care than you are able to provide. This also is not a reflection
on you.
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).
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.
Yes, I will plan on taking the CPAP back if she doesn't meet criteria.
My mom told me a couple of days ago to not worry about her. I really believe she meant that.
I get it. Even before my mom's stroke, she has had autistic tendencies. So I think that's why I often felt inadequate growing up and wondered why my mom and I couldn't have a "normal" relationship. I just figured out a couple years ago that my mom is likely on the autistic spectrum (especially after getting to know my husband's sister's tendencies - she has high functioning autism).
Visits:
I find that it causes me to be a nag…”mom , you know you need to walk down for meals “ mom you know your dr says you need to walk down the hall twice a day… mom, you need to wear your hearing aides so I don’t have to scream for you to hear me… mom wear your hearing aides, the staff gets frustrated trying to talk with you… mom Dr said quit sitting on the toilet unnecessarily for time on end…. Mom wear your compression stockings… mom you need to go to bed at night instead of falling asleep in your chair, it's bad for your legs.. then the complaint s of the staff, the food, the laundry,
on and on it goes. The other day she suggested my husband and I rent a house so she can move in😱 she complained they served cherrios for dinner the other night… “ well mom unless you have a million dollars somewhere, there’s nowhere else to move you to” “No, mom I won’t take you to target because you can barely get to the door” (see above)
uggg, sorry I am probably not much help…
all I have for you is protect yourself , put some distance between it all…..
Also, these facilities have level of care at a price. So if she can afford it, I would recommend that you sit down with the director of the facility and the head nurse to discuss a viable care plan for your mother.
My dad’s facility specifically stated that they would never provide 24 hour care and if it came to that, we would have to hire it out. Also, his facility doesn’t provide any of the items for daily living, soaps, shampoo, toilet paper, etc.
For a price, we can have his meds managed by a CNA. Make no mistake, it’s expensive and your mom is still pretty young. You might want to schedule a meeting with a life care plan caregiver to estimate the cost of care over her lifetime and her money to make it happen.
Then once you have your mom taken care of. You can even arrange to have her toiletries and meds delivered to her, then you can just visit her as a daughter.
Setting everything up for her will take care of your guilt and free you up to be with your own family. Just don’t abandon her. Take time to physically visit or call.
I've decided that if she doesn't meet the expectations for use of her CPAP, that it will have to be returned around the 30 days.
I have her depends and toilet paper routinely delivered. Other items are pretty minor and can wait several days or even a week or two if she runs out. I have told my mom that I can usually visit her about once a week most weeks.
Yes, next goal is to minimize her doc appointments and just keep care with her cardiologist and nephrologist.
I have the exact situation, a non compliance 80 year old mother with Parkinson’s and I believe an undiagnosed personality disorder (borderline)
To top it off she lives with my 46 year old quadriplegic sister and they both live to make poor decisions and use their disability as a get out of jail free card.
Recently I had to get with APS to remove a homeless man my sister was approving $5000 per month in IHSS hours bc she had a crush on him and was trying to put my mother in a home to make room for this bum.
It never ends and I am disability retired, they don’t care what they do to my health, they only care about themselves like a couple of 13 year olds.
If your waiting for your your mother to have empathy, it’s a long wait.
I lost my Dad when he was 47, he would have been a big help.
There is a difference between caregiving and codependent. It’s a unhealthy alliance.
My mom was so dependent on my dad. After he passed away, my mom was very lost. She moved half-way across the country to live with my grandma (her mom).
But then after her stroke almost a year ago (and grandma now in assisted living around the same time), my mom wanted to move near me. And I wanted to make sure she received the best possible care.
Now that I'm finding some push-back, I'm realizing that I can't do everything if she's not willing to comply. Though I think part of the reason she's been non-compliant is that she doesn't understand consequences and benefits due to her autistic tendencies. She just expects everything to work out the way she wants it to work out without consequences (my husband's sister is on the autistic spectrum and has this type of mindset too).
I just figured it out a couple of years ago that she's likely autisitic. Would have helped to know this so I could better understand my mom when I was growing up.
It's been a lot to process.
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.
You are in need of support for loving and letting go. We cannot control other's (especially our aging parents) actions, inactions or attitudes. This is very evident by your mother's continued non-compliance. I am having a similar issue with my mom as a non-compliant diabetic. You have done your best in educating, coaching and warning. With her in assisted living you can love her and let her be as much as the facility allows. You said you have discussed her non-compliance with the facility. They know it, now its your turn to let that fact be. This is a boundary you can begin with. Assisted living facilities can take over for those doctor appointments. Talk to your mom. Does she even want to go to all those doctor appointments. Does all that intervention give her the life she wants? I had that talk with my dad. My mom was ending the "monitoring appointments" with doctors as nothing was going to improve the outcome of his heart issue or his chronic, untreatable prothesis infection. My dad agreed. This ultimately lead to Hospice. My dad was thrilled at "no more doctors".
I still take my mom shopping and an occasional doctor's appointment (when she lets me drive her). The consequences of her noncompliance are slowly becoming evident. My heart is sad but this is where she is and there is little I can do about it (sometimes I remind her why she is having the issue and stop at that). I am not just her daughter but also her friend and respect her decisions even if I do not agree.
I encourage you to start with small boundary lines enforced with love and respect. Not only for yourself but your family and your parent.
If she doesn't meet the criteria for the CPAP within the allotted 30 days, the CPAP will have to be returned.
After thoughtful consideration, I'm going to see how much of my mom's care can be consolidated into her care with the assisted living facility's physician. My mom still needs her cardiologist and nephrologist due to congestive heart failure and chronic kidney disease. But I think the rest we can likely do without.
It was so scary when she almost died from her stroke. I wanted to make sure she got the very best care after moving her back half-way across the country to live near me. My family expects that of me too. But I'm learning that I've pretty much done all I can to help my mom. At this point, it's most important that she have a good quality of life.
Thanks for your feedback and support.
I'm at the point where if she doesn't meet expectations in 30 days, the CPAP will have to be returned.
I finally realize that the best thing I can do is to let her be happy and live the best quality of life possible. It's sad because she could have better. She just doesn't get it (not even the basics). I just figured out a couple of years ago that my mom is likely on the autistic spectrum.
I just felt like that by becoming her medical POA, I'm supposed to advocate for the best care for her (esp with my nursing background). But it's not in my power and I'm limited.
So if she doesn't meet the expectations after 30 days, then the CPAP will have to go back.
I was tested TWICE for sleep apnea--both times were through 'sleep clinics' and I came to find that EVERY PERSON who went through them amazingly needed CPAPs. I cannot wear one and. In one test I had 2 'episodes' which were the result of my border collie pouncing on the bed and shocking me awake. Could I get the clinic to believe me? Not one iota.
My MIL has had a CPAP for 20 years. She's 92 and hasn't slept a whole night with one, ever. She holds the mask over her face for about 20 minutes 'to breathe beneficial vapors' then turns it off and goes to sleep. We don't say anything to her, love of heaven, it's not helping her one iota.
Dh has a CPAP and after his 2 heart attacks, his cardiologist said to forget wearing it--if you aren't 100% compliant, it's pretty worthless. I used to really bug him about it, but have long since quit. There's hills I'll die on, this isn't one. He fought me every single night--so on the nights his snoring was unbearable, I lsept elsewhere.
BTW--EVERYBODY snores sometimes. My SIL and BIL both wear them religiously--but they are both very obese and it's a super issue for them.
As long as your mom is not deemed incapacitated of mind, then she will make her own decisions, and unfortunately, regardless of what you want. To make your life easier for you and your husband, you need to learn to accept that.
Let her know you love her and maybe even tell her you are stepping back. Talk to the SW at the facility and let them know that although you love and care about your mom, you cannot control her and cannot make her do something she does not want to do. Make your visits short and infrequent. And try to do what we always did in hospital mode. When you leave your visit with her, mentally "clock out". Turn the radio on; distract yourself, but think about you and your life.
Good luck to you!